If Your Stoma Isn't Perfect, Read On

Hi gang,

I was going to put this post in a reply to Bobc's post about problems he's having with his ostomy, but after writing it I figured I'd put it in its own post so more people might stumble on it. Here's some ostomy wisdom I recently got and I'm just going to throw this out there as food for thought for anyone whose stoma is not optimal. Looking back now that I've been an ostomate for oh....almost 10 years now.....if I could do anything over again I wouldn't have waited as long as possible to get my stoma revised. When I got my stoma back in 2014 it barely stuck out above skin level, and as it settled in it receded a tiny bit, making it at skin level. So I had to use a convex barrier. My stoma also was pointed to one side, not directly in front of me, so my output went pretty much sideways right under my barrier, and you can imagine all the problems that caused. The skin around my stoma got very weird over time, fistulizing and mushrooming into something I wouldn't even post a pic of for fear of viewers losing their lunch if they saw it. Eventually that mess caused a kink in my stoma that caused a total blockage of output. Before my revision surgery I was using the largest hole size barrier available and trimming it a bit beyond the "do not exceed" outer circle just to get it to fit around my monster. But this mess with my stoma happened slowly and I resisted having to get my stoma revised because I didn't want to deal with any more surgery. I didn't think a revision would really improve my life enough to make the downtime worth it. In hindsight that was a big....no....HUGE......mistake.

Now that I have a proper little 28mm stoma that sticks out about 1/2 an inch (and uses the smallest hole barrier) I no longer need a convex barrier and my output shoots out straight ahead of me directly into my bag. No more leaks or looking for different products........it's a whole new world now. In terms of the surgery I was lucky in that my surgeon was able to simply pull my stoma out a bit without opening me up, and I was out of the hospital in 2 days. But even if he did have to open me up it would have just meant a couple more days in the hospital.........and for the piece of mind I now have, as well as the confidence and simplistic barrier changes.......it would have still been easily worth it. I was changing my barrier every other day before my revision........now I can go at least 5 days or longer, but change it every 4th or 5th day just to give my skin a break and keep an eye on things.

So what I'm saying here is if your stoma is not optimal you're going to constantly struggle with things like leaks and short barrier wear time.........and you'll be on the merry-go-round of always looking for new and better products to make your life better. But if you just bite the bullet and get your stoma fixed......that all goes away. There's never any guarantees with surgery, but in my case I didn't really have a choice. But knowing what I know now I only wish I had done it 9 years earlier. I can't tell you how much better life with a stoma is when it's correct.....it's like night and day. And from what I hear on here it seems a lot of stomas are not made correctly........for whatever reason. When I first came on this site I kept wondering why so many were saying living with an ostomy was no bid deal........because for me it was a huge friggin' deal. Now that my stoma is textbook normal.........I know why they said that. With my new revised stoma my biggest issue is remembering I have one and not letting my bag get too full when out and about because I forget it's there. It's not worrying about a leak or blowout or swimming or having an emergency change kit handy all the time........or any of that other crap I used to worry about. So my advice to you is if you have a less than optimal stoma..........seriously consider getting it fixed............and put 95% of this ostomy bullshit behind you. I'm pretty sure you won't regret it. That's my story and I'm stickin' to it!

;O)

Bob

Interesting. I got my ileostomy in 2013. Had a perfect stoma. Then over the course of 6 years, scar tissue, external on the skin around my stoma, kept forming. It shrunk the diameter of my stoma down to about 15mm. I had a revision in 2019. Even though I didn't have as many symptoms, I felt like some foods were struggling a bit more to pass through, but it wasn't anything crazy.

The surgeon said the scar tissue was barely 1mm. Simple fix to remove it and just make a new stoma.

Had a perfect button stoma that settled around 22mm. But...almost 2 years later, I started noticing the scar tissue forming again. And now I sit with another maybe 15mm stoma. I have to use convex wafers.

The thing is, I have no issues really. A little spot of irritation directly under it but manageable. I get 3 to 4 days wear time. Food goes through me fine. So, if it never gets worse, I can live with.

But I have a feeling I'll need another revision at some point.

My ostomy is fine, it's the huge hernia that's a real pain. It's almost time to go in for my 5-year scope, so I guess it may be time for me to talk to the surgeon about fixing that.

Hi Osto,

What do you mean by scar tissue? I ask because when I left the hospital after my revision, my stoma was perfect. I had to change my barrier a couple of days after I got home and it was still perfect. Then 3 days later when I changed my barrier again, I noticed what looked like "skin" growing from my stoma upward. It grew incredibly fast, and I had no idea what it really was or why it was forming. I was afraid my Frankenstein stoma was coming back, and faster than ever. After two weeks, I was in panic mode and couldn't reach my normal go-to stoma nurses at the big hospitals near me. I also couldn't find any reference to what I was experiencing in any of my stoma problem books, and nothing like it online. I was in WTF land big-time. Then I found an ostomy nurse up the road a bit, and more out of desperation than trust.....I went to see her as soon as I could. She brought in a colorectal surgeon friend from that hospital and they looked at my weird skin growing around my newly revised stoma.......and by now it was about 3/4 the way around the stoma shaft. The surgeon got a puzzled look on his face and mumbled he'd seen that once before, but couldn't remember where. The ostomy nurse had never seen anything like it. So they pow-wowed a bit and told me I shouldn't wrap my ring so tightly around my stoma before I put my barrier on.....and that was their only advice. Feeling that that was a waste of 3 hours of my life I wouldn't get back, I told them I'd loosen up the ring and see what happens. At this point, it couldn't make it any worse. So I did. I loosened the ring by not wrapping it very tightly around my stoma.........and miraculously the weird skin receded, and then disappeared in about a week and a half. It's not returned, but I do wrap my ring fairly tightly around my stoma once again. But I would have never considered that weird skin that grew that fast to be scar tissue........just never thought of it that way because the hole in my abdomen for my stoma hadn't been messed with during my revision.......so nothing really to scar. But maybe I need to reconsider based on your post. Very interesting indeed.

;O)

Hi ND,

You know... not to be critical or anything, but I keep meeting people with hernias... some huge... and I can't for the life of me figure out why folks don't get them fixed? For all the problems they cause, I'd want that thing out of my life ASAP, if I had one. Yet few seem to do anything about it. Why is that? I mean, what am I missing? Hernia repair isn't rocket science... I had one done on my right groin back in 1976... and have never had an issue. So what gives... why does everyone want to struggle with such a thing, rather than getting it fixed?

;O)

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Surgery to correct a hernia will definitely help! I had it twice with mesh used the second time. Thankfully, that was last March and so far everything is better.

Best to you.

Judy

Apparently, the success rate of stoma hernia surgery is not that great.

Most surgeons tend not to operate unless the hernia is causing pain or discomfort.

I am assuming you don't have one at this time. My initial surgery gave me a very large one. Grapefruit/softball size. I have seen three different surgeons; each one suggests I don't do it, explaining if there isn't blockage, there's no reason to do it and it is just visual. No guarantee when they relocate that it won't herniate there. Researching on my own, I found out the same information, thinking the doctors were just putting me off. I have gotten used to wearing my hernia belt 16 hours a day or my Stealth belt.

Hi. In my case, the reason I'm procrastinating in repairing my peristomal hernia is because my surgeon said that in order to repair my hernia, he'll have to move my ileostomy (which I've had since 2018 with relatively few issues) to the other side of my abdomen and close up my current one. No fricken way am I going to voluntarily start all over again with a new stoma on my other side and have to order all new sizes of barrier supplies, etc. I also endured a grueling 4-month recovery time the first time around that involved visiting nurses (because they intentionally left my wound open after my surgery which required multiple daily dressings and re-stuffing of gauze [similar to the scarecrow re-stuffing scene in The Wizard of Oz]). I'll wait until I'm in an acute crisis situation and there's no other option, thank you very much! lol

Hi, I have a grapefruit-sized hernia around my urostomy, which stopped growing years ago, it appears. I do not wear a hernia belt as I learned on this site that there was no evidence that they actually did anything. I do feel more comfortable if I do wear it. I often wear it after a bag change, but not always.

My question is, do you think wearing one ever helped to slow down the growth or decrease the size of your hernia?

Jim

Bob, you mentioned that your output shoots out straight ahead of you directly into your bag. My output stays at the top, never goes down. I am now wondering if the "hole" area the output comes from is supposed to be on top of the stoma? Mine is at the top but in the back, by stoma. Do you think that is why output stays on top? --Thank you

Hi pandj,

I hear you, and thought that myself. But talking to a few surgeon friends of mine about the subject, it seems, at least from their perspective, that the high failure rate isn't from improper surgery, but rather from the patient not heeding the post-surgical advice to not lift heavy things for 6 months or longer. And I realize folks think they're fully healed before they truly are, but if it were me... knowing the high failure rate and what caused it... I'd lay low for a year or so and put it in the rearview mirror. But that's just me. So I think the failure is on the part of the medical community to stress the importance of not lifting for the specified amount of time. They basically tell you as you leave the hospital, and then leave it up to the patient to behave. Obviously, most don't or won't, so more intervention is needed to improve the success rate. Again, doesn't sound like rocket science.

;O)

Hi Burru,

If I'm hearing you right, then no, the output hole of your stoma should not be on the top of the stoma. Think of it as a garden hose sticking straight out of you. The hole should be perpendicular with all sides of your abdomen... so shooting straight ahead. If yours is on the top, I could see where your output would stay on the top. That means the intestine was either cut on an angle when they made your stoma, or the top of your stoma has been restricted in some way from sticking out the same amount as the bottom. Probably an easy fix, but I don't want to mislead you in any way. I'd talk to a surgeon or three about it and see if they could revise it to shoot straight out.

;O)

Hi Spyke,

No, I don't have one now... and I don't mean to trivialize anyone who does have one, so please don't take my post that way. The issue I have with what your surgeons told you is that yeah, it's just visual, but you run the risk of having it get bigger and even potentially strangling your intestine if it pops through the opening. I've put a link to a good article on peristomal hernia repair below, just FYI. If you do have a big hernia, I can see why a surgeon would want to relocate your stoma and repair the area conventionally. But that doesn't apply to everyone. Many hernias can be repaired without relocating the stoma. I guess the take-away for me is to get it fixed BEFORE it gets too big to mandate a stoma site change. Everyone's situation is different, and I foolishly generalize a lot when talking about this stuff... so of course do what's best for you. I just want to make others aware that hernias can be repaired to improve quality of life... and the sooner the better.

https://www.hernia.org/types/stoma-hernia/

;O)

Hi OU8,

I hear you! See my reply to spyke5 above for my feeble apology if my post ticked you off!

;O)

Deja vu, folks. I got my stoma in 2019. Sometimes I'd cough without holding the peristomal area. I herniated and prolapsed. I did a bit of lifting, but stopped. My surgeon got upset with me. He said, "Prolapse repair usually fails in a short time." Plus, he said my hernias are too small, so I have to live with it. My wafers would strangle my "little buddy" and it hurt. My ostomy nurse switched me to soft barriers. It was uncomfortable and leaked underneath when it shrunk. It has a low and high side, and a tiny bit of poop would get under it. I tried Hollister, Convatec, and Coloplast. Hollister Form Flex has the cheapest material, but the best fit and is the easiest to drain. I cut the hole to 16mm with a scalpel and the paper guide that comes in the boxes. I carefully smooth the edges and line up the stoma. It has been much better.

Or worse in men. Your bowel loop can protrude into your scrotum. I've performed many BAE's it was gross on film.

Jim, I have a small prolapse hernia. Since wearing a Stealth Belt, exercise, chores, and walking is much better. Makes hills easier on my gut. I wear it every time I leave my home. Got 3 of them. Smaller than a hernia belt and easy to hide. If you place it on just right, it will prevent a leak when on the go (yuck). I hiked up 1,000' and got a tiny leak. Tucked a rag under the belt, in case. Not a drop leaked out. Drove home an hour later and into the shower. You know the routine. Good luck.

Jesus guys, there's so much to consider here. My head's in meltdown. I have so much admiration for how you deal with these really heavy issues. I know the old adages such as "life goes on" and "just get on with it," but that's too easy to say and I'm sure it doesn't f**king help with the actual trauma. I find the whole subject so daunting and I wish you all well with the fight against it. Prior to and after my surgery, I was warned by the team that I should do everything I could to avoid a hernia because, certainly where I had my procedure done, the chances of having a hernia repair were virtually nonexistent and only the very worst cases were considered for any kind of remedial action, supposedly because they are rarely successful. Too much room for thought here, Bob, blows my bloody mind.

Good job you're here to help, Bob. Needs your experience, buddy.

Brian

My stoma nurse has told me that after hernia surgery, as little as a forceful sneeze or cough, etc. can make them return. I've developed a hernia, it's not that large that it shows under my clothes [I never wear them skin tight in any case] nor does it cause me any problems at the moment.

Had my ostomy fifteen years ago on 16th July.

I've not had many problems eating and drinking whatever I like.

I enjoy curries and drink far too much real ales, cider, and wine.

But I do have a hernia. My original surgeon, Dr. Amin, who saved my life, had a go to fix it but unfortunately was not successful. I went to see Dr. Amin after, and he said it would be a massive operation to try again. He said, "If you're not in pain, leave it be!"

I couldn't agree more with this post. Thanks, Bob.

So glad to read this. That is my problem. I will have to look into revising my stoma