Considering Stoma Revision Due to Seal Issues and Output Management Concerns

Hi everyone,

I'm 36, I have a genetic anomaly that sort of mimics an IBD, and after everything failed to treat the condition or give me a decent quality of life, I had a colostomy on April 30th.

My surgeon opted for a flush stoma (to minimize the risk of parastomal hernia); this part we had not discussed in advance. I know that approximately 30% of colostomy patients can develop a hernia; but I also know that 35% of stomas that do not protrude at least 1cm 48 hours after surgery give huge problems with 'management'.

My disease is of course still present, but it is much more manageable with a bag. My stoma is pretty active the first hours of the morning and demands my full attention for a bit, but the rest of the day I can finally have a life, go to places, be out of the house.

The only problem is: I can't get a tight seal. Wafer and paste: some output seeps under it; the wafer stays on for 48 hours, no leaks, but it isn't a tight seal. I tried paste (where the stitches left a bit of scar that is concave) and a moldable ring: a bit better, but for the most part not good for more than 48 hours.

Essentially, the stoma is flush, the output is not solid, and even if I change the wafer in the afternoon so the new wafer won't likely deal with any output for hours, even just a bit of mucus pools at the edge.

I'm using a convex wafer from the start, the adhesive itself holds well, the problem is that with the little dip where the stitches were, and with where the stoma "aims", everything gets eroded fast in that angle (the inferior part). If I use paste and/or rings, on one hand, it helps, on the other hand, it adds 'height' to the wafer, so my stoma can't stick out, it's below level despite the convex wafer.

I've discussed a revision with my surgeon. He's open to doing it, but he sounds uncertain if this would help...

I'm unsure too: in the morning, except for a bit of solid output, the rest is very soft, and my stoma gets surrounded and essentially fills the wafer area - so I push it down a bit, I empty the bag, take off the bag and clean it all (so it doesn't pancake), put the bag back on. Since it's our rhythm that's just how the first 2-3 hours in the mornings go.

On one hand, I think that a protruding stoma would not "push" on that one spot below it. Even with no output, any paste or ring there gets eroded shortly - so even if nothing seeps between wafer and skin, too much skin gets exposed shortly after the wafer change. A protruding stoma would have a better chance, right? And it would be at least easier, statistically, to get a tight seal, by "surrounding" it with either paste or a ring, right?

On the other hand, I'm wondering if my output would always give troubles. And in that case, I'd be going through a repeat surgery and recovery, to be in the same boat after... Plus more risk of parastomal hernia.

My ostomy nurse isn't super helpful: the most she said on this was "theoretically yes, protruding ones are usually easier to seal".

My surgeon is willing to operate and make it protruding, but he doesn't sound sure of the result... Should I simply ask another surgeon for a consult? Maybe a more experienced one would have a stronger opinion on this, and give me a better idea of what we can achieve with the revision?

Just to add: the best disease management we've had is one Imodium every morning. That limits the output, and slows down my transit just enough to absorb nutrients decently. I'm not sure I can add other meds to "control" the consistency of my output; but maybe more than that, since my gut is sensitive and not healthy, I want to know that my stoma and the devices we use have a decent seal even in the "usual" circumstances, which includes a soft output.

Consistency is not ideal, but we're still talking about output that essentially only happens in the space of 2-3 hours. With me cleaning several times, with no bag weighing down because I'm only taking care of my bag in those hours so I'm either sitting down or supporting it on the way to the bathroom to empty it, I don't think the circumstances are overall too much for a wafer.

Am I correct in seeing the main issue in the flush stoma? On the lower part, right side, at times it looks more retracted than flush, so it just shoots that way.

I need some advice. Is the revision the right step forward?

Should I look for a more experienced surgeon than this one? (Also, in that case how does one find those specifically?)

Sorry for rambling and not putting my thoughts in a better order, I'm just so unsure and feeling quite anxious right now. Thanks for reading, and for any advice you can have.

I had a revision about 6 months after my colostomy because half of it retracted to just below the skin level while the other half stuck out as it should. Even with the convex wafer and all the paste, I had leaks. The revision was an easy surgery compared to the bowel resections and ostomy.

But in my opinion, yes, you need to find a more experienced surgeon.

As far as finding a surgeon in Italy, I do not know. But you want a colorectal surgeon, so if you can look them up by specialty, then that's where I'd start.

Best wishes to you!

Kim

First off, thanks a lot for replying and sharing your experience!

To be fair, this surgeon has enough experience, and my gastro specialist has renewed her endorsement this morning on the phone (she actually thought it was a good sign for the surgeon to have some uncertainties, in the sense that if the scars from the stitches were a factor, then operating again might pose another problem with more scars - she was reassured when I told her that actually the scars are not the main problem, that's okay with just a bit of paste, instead the main issue is above the scars, in the area immediately below the stoma). So when I see my surgeon again next month and we discuss the issues more extensively like I did with my doc today, I will listen to what uncertainties he still sees. If it's just a generic pros/cons thing, and such.

I know that sometimes a similar procedure can be done as an outpatient, just locally, "cut and pull", but my surgeon prefers a laparoscopy so he can mobilize the bowel properly and have more control over the protrusion. The "just cut and pull out a bit" method can cause some tension (with the bowel not being mobilized from inside) and occasionally the tension will pull it back again during the healing. That sounds very reasonable to me.

I'm okay with doing another laparoscopy. The first one, I had no idea if life with my disease AND a stoma would be better than before; now I know it is. If a revision and a protruding stoma will solve the 'technical' issues, then I'm okay with a do-over.

Mostly, I guess I was looking for reassurances from other ostomates, that this does sound like something that a protruding stoma will solve or help a lot with.

It does sound like a similar "shape", the one you describe. Three-quarters of my stoma are flush, one-quarter is a bit retracted, and the difference is more noticeable when it contracts, and that fourth creates a highway directly towards paste and wafer.

Thanks again, Kim!

Hi Kim, welcome to the site. It sounds to me like your surgeon is overthinking this. It's not as though he has to remove a lot of the colon, maybe an inch or so, but he makes it sound like a big deal reorganizing the colon. Maybe it's time for a second opinion. Good luck.

A little while ago, I made a comment suggesting that maybe the reason people were having problems with their ostomies had to do with the skill of their surgeon. I got some pushback on it, but I still stand by what I said. In my case, I felt lucky that I got the surgeon that I did; the stoma was placed in the right place, sticking out the right length, and in the little more than a year and a half since the surgery, I have had absolutely no problems. I'm not saying that there might not be some in the future. Not all surgeons possess the same skills. Some are great, some not so great. It's the luck of the draw. Then again, if all surgeons had great skills, there'd be no need for medical malpractice insurance, would there? I'm probably going to get pushback on this also, but it is what it is.

How to Manage Emotions with LeeAnne Hayden | Hollister

I'm sorry. Your surgeon is a meatball. A skin-surfaced stoma is big trouble. You can't avoid a hernia. It's gonna happen. Controlling it with a belt really helps a lot. He lied. Call him on it.

Welcome to the community. Good to have you.

From my understanding, he's willing to operate as long as it's necessary. But yeah, 30% of colostomates get a hernia; 35% of flush (and short) stomas cause issues because of them being flush/short.

So, I'm not 100% sure that his reasoning made sense. Yet, local specialists reassure me that he is a good surgeon and very experienced. It isn't easy to ask around, "Is there a better surgeon that makes prettier stomas usually?" :P

I think most medical professionals have trouble answering that question diplomatically. I'll ask my other GI doc for advice, maybe I'll seek a second consult too. Just to get a better idea. Thank you!

Thank you!

I have a final appointment with him next month. I guess I'll see how that talk goes. Hopefully, I'll find him well conscious of the statistics I've read in scientific studies, and willing to discuss even details like 'optimal length' with me. Otherwise, maybe a second opinion is in order.

On the other hand, I'd like to do this quickly, so maybe my GI docs can suggest other names, and I can hear a second opinion before then!

(Another "good" surgeon in this area wanted me to have an ileostomy for no reason at all, somehow convinced that giving my colon a chance to rest would magically heal an inflammation that immunosuppression hadn't improved, and that is genetic-based... So this other one was already the second, better consult, back then!)

I'm sure surgeons' skills, experience, and good planning are fundamental. My surgeon did put it in the perfect place, so at least there's that.

It's just hard to find suggestions for good surgeons specifically for stomas, so I think I can only rely on good doctors that have followed me in the last years. I was hoping my ostomy nurse would be willing to mention some good surgeons - she must have seen the best and worst choices in stomas, right?

This is hard to navigate, in that sense.

And I know that the healing process can make for some unpredictable changes too; yet, if a stoma is made flush by choice, or very short, the unpredictable healing has a better chance of causing a partial retraction in one spot or two, probably.

You need a second opinion, as Warrior already said. Once you have any surgery on your stomach, you have muscle weakness, and the risk of hernia could happen 30 years after surgery, as it did to me. To be honest, the best place to site a stoma is through your belly button, as the hole already exists. It was experimented with in the early '80s and was very successful in preventing hernias. The downside was that bags didn't stick very well, so almost all of the stomas were resited.

Interesting exposition, Ben - the belly button 'natural' aperture in place!!! Wow, I guess that research was somewhat logical? - Although personally, I can imagine a number of inconvenient issues with a central location both in terms of toileting and intimacy!! I would have had no idea of such a thought, let alone that the research had also been done - Thanks for mentioning this little nugget of info, Ben.

 

A second opinion would seem to be in order for our friend Jay.

 

BW

 

~ ~ ~ ~ ~ waves ~ ~ ~ ~ ~

You need revision surgery. Pull the stoma out at least an inch. Hernia has nothing to do with stoma length. A stoma that sticks out at skin level usually causes more problems than a hernia. Support belts help with a hernia.

Oh no, of course hernia has nothing to do with stoma length! I probably explained that weirdly. It has something to do with stoma width though. Studies have shown that if the "hole" in your abdominal wall is below 3 cm, the chances of a hernia are much lower. So the smaller (in width) the stoma is, the fewer chances of parastomal hernia you have. Mine is below 2 cm, since it 'looks outside' but the gut is not pulled through, so with the size it has fewer risks in that sense.

Honestly, I understand that when flush stomas cause management issues, it is because they are flush. And yet, if 35% of flush/short stomas cause trouble and need a revision, that also means 65% of flush/short stomas are just fine.

I do see how that could be, depending on the perspective one chooses, one thing to try for a young-ish patient looking at life with a colostomy. If the flush stoma had worked well (or maybe even healed homogeneously and pointed forward instead of towards the wafer), I would have had less risk of a hernia, no need for stoma guards or padding for seatbelts... a lifetime of stomach sleeping 😅😝

I wouldn't have risked the management issues if I had been asked. But I kind of see that it was a worthy try, in a sense.

😝😝 Well, now... the belly button idea wins first place for "thinking about hernia only, and zero about wafers having to try and stick to that" 🤣

At least my surgeon was trying to think about both and gambled on that 65% chance of a flush stoma working well in terms of management.

Although, I need to add: umbilical hernias are a thing. The belly button is definitely not too tight to avoid a hernia, even in natural circumstances! Bodybuilders, with the frequent added intra-abdominal pressure of their workouts, are sometimes at risk of umbilical hernia, without any stoma or any surgical enlarging of the belly button :P

Managing a flat stoma is not impossible but can be quite challenging. Having very liquid output can be a non-starter. You need to find a way to get more solid output. Bananas work very well for me. I have a transverse colostomy that normally has liquid output — liquid output because a lot of my colon was removed. The second thing you need to do, and this is a must, is find a flat area where you apply the barrier. You can fill in any dips with a barrier ring. You don't apply the entire barrier ring around your stoma since that does not change the dynamics. Cut the barrier ring in half, then roll up each segment into a horizontal cylindrical strip. Layer the strips into the dip(s) to bring it up to surface level. Now you can apply the barrier on top of this flattened area. It takes practice and a good understanding of what you are trying to accomplish.

My stoma is pretty large. I'm at max wafer hole diameter. And a loop of small intestine is pushing up on the stoma's left side. It looks funky from time to time. If my stoma hole were smaller, it probably could have prevented that. But my surgery was unplanned. My surgeon did a great job of locating my ostomy. I wear hernia belts all the time. You get used to them.

Any time I gripe about Mr. Stoma, my wife reminds me to shush.