Seeking Advice: Protruding Stoma & Hernia Belt

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2288
Old Bud
Oct 02, 2020 5:11 pm

4 months from ileostomy surgery for bowel cancer. I have developed a hernia under the stoma. I ordered a hernia belt to wear for physical work. It is a bit uncomfortable at times but is bearable. At the end of the day, I noticed my stoma protrudes almost an inch and actually hangs down into the bag a bit. Seems to go back when I lay down and/or change the bag along with the hernia. We use a convex flange that is moldable to fit the stoma just right. By email, my surgeon doesn't seem concerned about injuring the stoma or the hernia. He said it is very tough. I am desperately trying to keep the hernia from getting worse. I wish I knew about hernias before leaving the hospital. I would have had a belt right from the start. I have been loosening the belt every day to see if it helps but it doesn't seem to. I'm not sure how tight it should be.

Does anyone have any experience or advice with either of these issues? Thank you so much!

Past Member
Oct 02, 2020 6:54 pm

Bud, I sincerely hope that what you're describing is not a stoma prolapse! That can be a serious and painful condition that requires a trip to Emerg. While I have not experienced this, I know others on this site have, and I'm sure they will have something to say. In the meantime, keep an eye on it, and call your stoma nurse. There is information under Collections in the upper right corner of this page, either under Ostomy Tips or Premium Content about what to do in the event of a prolapse. Please have a look, and be prepared in case anything goes wrong. Good luck.

Laurie

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Ritz
Oct 02, 2020 7:13 pm

My surgeon told me if I ever wear my hernia belt, then I have to use only the flat... not convex. When I run or know I'll be doing aerobics, I change my appliance to the flat...

butttt, I leak without my convex. I suck up my discomfort of my stupid hernia until I decide if I want surgery to fix it. As long as my ileostomy still works, I'm leaving my new hernia be. Everyone is different though, if your surgeon has seen it and says you're ok... then?

TerryLT
Oct 02, 2020 8:00 pm

Hi Old Bud, what you describe sounds like a prolapse. Mine started the same, maybe an inch or so protruding. I was able to push it back in and it only happened just before my stoma would become active, then it would go back to normal. Eventually though, it came out several inches, five to six maybe, and was filling my pouch. My output stopped completely and it was a trip to the ER. I was terrified! They managed to get it back inside me without surgery, but I had to be put under twice. I'm told there is no guarantee that it won't happen again, but it has been behaving itself for almost two months now. I am waiting for surgery for a loop ileostomy which in my case is supposed to lessen the chances of it happening again, mainly because they think mine happened because of the pressure that builds from having to take large amounts of laxatives. Your case is very different as you already have an ileostomy and laxatives don't come into it. I'm wondering if it's your hernia that is causing it. Anyway, you should talk to your surgeon or ostomy nurse about things you can do if it prolapses again or prolapses a lot more than it already has. If the prolapse gets too bad, it does require surgery, something you sure want to avoid. Just a couple of tricks I have learned if it starts to prolapse, lie flat and apply an ice pack (put the ice in a plastic bag and then a pillowcase so it's not directly on your stoma). You will need to remove your appliance unless it's a two-piece, then just the pouch itself. You can also put white sugar (yes, sugar) on your stoma while staying flat. Put a towel under yourself as it's pretty messy. These things will only work if it hasn't prolapsed too far, so you really need to keep your eye on it. Good luck and I would be interested to know how things continue for you.

Best wishes,

Terry

Old Bud
Oct 02, 2020 9:00 pm

Thanks so much for the replies.

It doesn't seem to do it when I don't wear a hernia belt. The belt seems to want to push it out. As harvest is almost done, I am leaving the rest to my sons and will go back to the lake and try to rest. My surgeon doesn't seem concerned about it at all. I don't want to end up in an emergency as I am just starting to manage this new normal. I'm okay with all this, I just don't want more surgery as I didn't do well the last time as I went septic. Thanks again, best!

 
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Immarsh
Mar 13, 2021 12:57 am

Hi Bud.

My name is Marsha, and I've had my ileostomy for more than 50 years, since I was a teen. I really liked what you had to say in your profile. I was very young when I had my surgery, but I accepted it readily, preferring the ostomy to the uncertainty of 4 years of ulcerative colitis. It allowed me to get back to real life, school, dating, activities....and then later, marriage, 2 babies... Little did I know then how many problems there could be with ostomies, and for the most part I had no serious maintenance issues in the first 45 years. I swam, biked, snorkeled, and did whatever I felt like doing........as long as I took my supplies along. Back in the dark ages, there were no stoma therapists/so people with ostomies helped other newbies. I did that for a few years. My ex also had an ileostomy, but his surgeon fashioned one that was about 4-6 inches long (almost like another penis) and it developed a bulging curve over time.. making it difficult to change... Perhaps he actually had a "prolapsed" stoma. Eventually, he had his redone (problem free) to about an inch (like mine) and that ended problems with changing... over time, (and two pregnancies) my stoma has pulled back in, so the bottom half is only about skin level.. That does cause more leaks now than I ever had in the last 50. But I've been advised to do the best I can, and as long as it continues to function, don't get involved in surgery.. I use Convatec Convex two-piece system, so changing is relatively simple. But I didn't avoid the hernia issues. I had a small incisional hernia for years.....but started getting larger... Now it looks like one side of my belly is "somewhat pregnant". Again, I was advised to leave it alone, as long as it's not bothering me... So that's the medical/surgical history..

I was married for 24 1/2 years.....and divorced more than 20 years ago.. Once single, I worked as a teacher, and managed to travel the world...... on discounted options affordable on a teacher's salary... I was born in Brooklyn, NY, but we moved to NJ to buy a house, and that's where I've remained. Although I've lived here in what once was rural NJ, over time it's become suburban. Gone are most of the fields and farms, trees. But I'm still only a 1/2 hour from "The Beach" or The "shore" as they say in NJ.. Can't get the city out of this gal as I still consider myself a transplanted New Yorker... I still have many interests (music, reading, theater, dining out, cooking....socializing with friends etc.), but my wings have been somewhat clipped and long-distance travel is not really an option.....for now, given COVID.. I have 2 grown sons, both married and raising kids of their own. My older son has a 10-year-old little girl and lives in the "wilds" of the Pocono Mountains, in PA, and my younger son met an Australian gal and moved to Australia (south of Brisbane). I have two Aussie grandsons, who are growing up so fast (8, 12 now); I've been to Oz 7 times, and had hoped to be able to continue to go yearly.......but life doesn't always give you what you want.. I'm grateful for FaceTime and Facebook... I think this is enough for now. Please write if you'd like. I'd love to hear from you. Marsha

Old Bud
Mar 13, 2021 1:43 pm

Thank you so much. Your story is so inspiring. It seems there is nothing you can't do. It seems to me much physical activity and this thing prolapses quite far. A couple of inches now and I can feel it is uncomfortable. Lying down for a while allows it to retract back in and the hernia as well. I have advised the surgeon to schedule the reversal but will decide closer to the time. He thinks it will be 6 months or so. If things don't get worse I can easily live with this the way it is. At least I now have control over when I go to the bathroom. I wish you good luck and hope you get to travel in the new world. All the best.