New Colostomate - Overwhelmed by Post-Surgery Challenges and Seeking Advice

Hi everyone,

I recently (4/22) had surgery to form a sigmoid colostomy. This was an elective procedure that came after two decades of medical issues ranging from pelvic floor dysfunction, to two rectal prolapses, to incontinence. I tried diet, medicine, rectopexy, biofeedback (four times), and finally an SNS implant, which gave me two blessed years of normalcy before my symptoms returned. I have lived with constant insecurity for many years, to the extent that it has made a social life impossible. The colostomy was the last item on the algorithm. Choosing this was not easy, but I have tried to make the most of planning a smooth adjustment, reading about other ostomates' experiences and contacting companies for samples.

My first week out, I have already had two leaks. My stoma is extremely swollen, even more so than is normally seen after surgery, at 2 inches in diameter. I was seen by an ostomy nurse in the hospital, and a home health nurse who both told me that my pouching was excellent, only to be told by another nurse that I was strangling the stoma and that I would need to sugar it daily just to see if the issue resolves. Now I am trying to cut the flange bigger, but have been leaking. The supplies I paid for out of pocket so I would not go home empty-handed are already running down. I must return to work soon and I'm scared. I knew things would be tough in the beginning, but I'm worried that I won't adjust, and that my life will continue to revolve around my health issues. After years of isolation, I just want to get on with life and make friends. Thanks for reading.

Hi Yearling, Welcome to the site. Your post brings up lots of questions. You say your stoma is swollen, and I'm wondering why a nurse would recommend sugar, as that is used for prolapses, which is an entirely different thing. Sugar will do nothing for a swollen stoma, and the question is, why is it swollen? Is your output normal? The only time my stoma got swollen it was because I was obstructed. It had nothing to do with the products I was using or cutting the wafer too small. It had to do with my bowel not functioning properly and pushing the stool along. I've also had a prolapsed stoma, which is a whole other kettle of fish. You say you have a history of pelvic floor dysfunction but you don't mention constipation. Was that not part of it? I started out with a colostomy after my bowel perforated from years and years of chronic 'constipation', which was actually colonic inertia misdiagnosed. After the colostomy did not work, I was given an ileostomy, which changed my life for the better. If the only problem you have is finding a system, products, that work well for you, it should be relatively easy to solve. There are so many different products out there, combinations of various options, wafers, barrier rings, etc. Sometimes it can take a while to find what works best for you, and no two people are the same, so it's hard to make recommendations, other than to try lots of different products until you find the right ones. In your case, I think it's more likely that your problem isn't in the products you are using. Your stoma shouldn't be swollen. When your stoma is swollen, are you having normal output?

Terry

We will fix your issues. 😁 Tell us what you're using exactly and how you apply it. Why did they make your stoma so big at 2 inches? With a colostomy, you don't necessarily have to have everything super tight as you shouldn't be dealing with such liquid output like an ileostomy can produce.

Hi Terry, thanks for the welcome. :) To your question about the use of sugar, I think the idea was the same osmotic action that helps with a prolapse helps with non-prolapsed stomas. In theory, the excess water is drawn out into the sugar crystals. I don't know what my nurse's Plan B is if sugaring for a week doesn't work. 

I am not sure why my stoma is swollen. It was 45 mm in the hospital, and it's gone up since I went home. I was using a soft convex system and a hernia belt after discharge; the nurse thinks it put too much pressure around the stoma. I switched to a flat, and I'm still waiting to see if it helps. I was extremely constipated a day or two after discharge but not technically obstructed. I'm putting out maybe half a bag of applesauce or paste per day now. 

I've never had any kind of transit testing to determine if that's part of my issues, but I can tell you that my pelvic floor is so tight that even loose stool gave me trouble. I'd have the urge to go; I just couldn't go voluntarily.

Welcome to the group, Yearling. Terry has given such good advice along with Alex. Things will get better for you. Try different products. Watch YouTube channels; there are many. You want to make sure that your pouch is fitting right.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Hi Alex, thanks for responding. I'm not sure that the surgeon meant to make my stoma so big. She believed it would end up being around 40mm. It's just that the swelling was supposed to start going down and instead it got worse. I was using a Hollister CeraPlus flat 70mm two-piece system with an Adapt barrier ring (now a Brava ring since I ran out of Hollister samples). I use Coloplast adhesive remover spray to take off the old system, wipe with an adhesive remover wipe, clean the area with water (usually in the shower), dry off (with a blow dryer if possible), apply a Cavilon skin barrier wipe to the appliance area, stretch and stick the barrier ring on directly around the skin next to the stoma, warm up the flange, line up to the stoma, stick it on and press for 3-5 minutes.

Aside from the stoma itself, there is a large bulge over the stoma area like a shelf. Not sure if it's just post-surgical swelling or if I already have a hernia.

Do you use the hairdryer to warm up the flange? Is your skin in good condition normally? Does the bulge look like you have half a softball under your skin? With a stoma that big, I presume you have to stretch the barrier ring a lot. I know I do, and mine is 44mm. You might try ordering samples of the Eakin Stomawrap or the Eakin one that is a really big circle but the hole is small (can't remember what they call that one) and then cut your own hole so you have a decent barrier ring.

The Yearling, your technique for applying the ostomy appliance seems sound. Since you intend to go back to work soon, you may, for the time being, need to stop experimenting with cut-to-fit wafers and use a moldable wafer that conforms to your stoma. I think the ConvaTec Natura moldable two-piece skin barrier will work for you: Ref# 411806. It will conform to stoma diameters between 1 3/4" - 2 1/8". It also has an extra-large flange (2 3/4") to provide more adhesive area for the large stoma.

https://www.convatec.ca/products/pc-stoma-durahesive-technology-products/c88c28d9-f132-451a-a9ef-79bed97f0b65

I further recommend you try the Eakin Cohesive Stoma Wrap (Ref# 839006). Rather than stretching a ring to cover such a large stoma, you just wrap it around the stoma until it overlaps.

https://www.convatec.ca/products/pc-accessories/296ac332-3328-46ed-9a62-fd5673d65a39

Since you have not mentioned using ConvaTec products, you should be able to get free samples of both of these.

I attached a picture of the Stoma Wrap.

🔒 Login to see image

Sounds like you have the process down like a pro, but you're still so fresh out of surgery. The 22nd was only a couple of weeks ago. The stoma swelling should go down, but how soon do you have to go back to work? This is a major surgery, and your physicians should really give you plenty of time for recovery. I would definitely call around to the major supply companies and see if you can get some samples just to try things out. Some barrier rings work better than others, at least in my experience. For me, I have to stick with Eakin rings.

Hang in there. It'll get easier and less scary, but try to give it time and keep trying out new products to see what works best.

Yes, I use the hair dryer to warm up both the flange and my skin when I can. My skin was in pristine condition before all this started. With the constant changes, it's getting inflamed. The bulge is kind of strange; it's like a swelling that is just above and directly behind the stoma itself. It's hard to describe, but I think it makes it hard for a flat flange to work, but my ostomy nurse told me not to use anything but flat for now. I'll look for the Eakin Stomawrap, thanks for the tip!

I'll see if my ostomy nurse has samples of those available. Thanks for the tips!

Technically, I have a few more weeks, but I fought tooth and nail to get unpaid leave because I'm not eligible for FMLA and was even threatened with being fired. I don't want to push things as they are, so I'm trying to get back to work as soon as I'm able, since my health insurance coverage depends upon it.

Thanks for the words of encouragement. I'm looking forward to the day when things start to get easier.

That's pretty much how my hernia looks. The bulge is right where my stoma is. I use a one-piece flat flange with no issues.

You can also contact ConvaTec, and they can get them out to you right away. You can maybe get your ostomy nurse to sign you up with ConvaTec's me+ introductory kit with those items. The kit will also contain adhesive wipes, removal wipes, and some other accessories. Hollister has a similar kit, and they have a moldable barrier called the FormaFlex. Finally, you should get a belt to hold your appliance close to your skin. ConvaTec and Hollister both have belts you can get for your appliance. Hollister will send you a free sample of their belt.

Hello Yearling,

It takes time for swelling after surgery to recede. Stomas change shape. Get longer, bigger, shorter, smaller, due to peristalsis.

I'm at 16 months post-op. My colostomy is oblong, 57 mm at its widest point and sticks out from 1 to 2 inches. I also developed a peristomal hernia. I'm a little guy, so it's very noticeable under my shirt.

I use Hollister flat wafer, 2-piece system with a Coloplast Brava moldable barrier ring and 3M barrier spray.

I was told by my surgeon my ostomy would shrink after a couple of months. Didn't happen. Actually got a little bigger, then stabilized. It is very easy to develop a peristomal hernia under or next to your stoma. It looks like a bulge. I have one. You could have one right after surgery, or get one months later. The only way to attempt a fix is surgery. When I go out to dinner or something formal, I wear a Nu-Hope support belt with a prolapse strap. Temporarily decreases my "bulge" quite a bit.

Your stoma might just be... big. Mine is about 2 inches. Don't try to cut the wafer hole close to your stoma size. No. I cut the hole 1/8 inch bigger all around. Easily clearing my stoma when I do a test fit.

My routine:

After removing the old wafer, I shower using Cetaphil soap. Once dried off, I use an electric pubic hair shaver around my stoma. These are better than regular shavers, no skin irritation or pulling. I use a small precision scissor to snip remaining hairs.

I spray 3M Cavilon on. Take Brava barrier ring out of plastic carrier, put it between my thighs for a minute to warm it up, remove the 2 plastic covers, cut through one side. Then wearing new gloves, start at the center of the ring opposite of the cut side, and squeeze and stretch the ring. Working my way to each end. I have a small ruler. Diameter of my stoma is 2 inches. So diameter x 3.14 will equal the length the ring should be. In my case, about 6.25 inches long. Once I mold and stretch the ring to length, I fit it around my stoma starting at the stoma bottom and the center of the ring length. Working my way up around the stoma sides until the ring ends come together at the stoma top. Sometimes the ends overlap or there's a small gap. I just leave it. Make sure the edge of the ring is right against the stoma where it exits the skin, all around the stoma. Lightly use fingers to press it into place and guide it.

Then I take off gloves, put the wafer against my stomach for a minute to warm it up, then pull the plastic backing off and fit it over and onto the stoma. I press the fabric tape down at the top, fold the tape sides outward, then press the bottom tape down onto the skin. I remove the tape backing on the right side, hold it taut and press it down on my skin. Do the same for the left side. Wrinkles in the fabric tape don't hurt anything. I smooth them down with a fingernail.

Then place hands on the flange and press against your skin for a minute. Reposition hands, hold again for a minute.

Grab pouch, make sure Velcro closure is secure.

Pro tip: Create a pleat in the 2 plastic bottom pieces of the closure before you fold it up and secure the Velcro. If you don't do this, when you empty the bag, you'll have a hell of a time opening the drain. Nothing is stickier than poop.

Put in some M9 or lubricating deodorizer through the bag flange opening. Align it to the wafer flange, press it on. You should hear a click as you work your way around pressing it on. Get a handheld mirror. Fold the bag up and look at the bottom of the flange to ensure the bag is securely snapped on.

Pro tip 2: Obtain a small paper binder clip, also known as an IGGIE clip. This is the kind where the handles fold down. Roll the bag bottom drain up 1 time, put the clip on at the center of the drain. Fold handles down. This will prevent the drain from suddenly popping open when full of poop. Also decreases the bag length slightly. I use the clip every day.

I then put on a thin Hollister belt that snaps onto the bag flange. I wear it every day, all day and night. I have 6 belts. Clean them by hand.

Changing the wafer too much will tear up your peristomal skin. I change every 7 days with no problems. Change bags as required. Snap the old one off, snap the new one on.

Let us know how you're doing. We've all been "there".... staring at the little stoma beast and wondering... what the hell?

Hi

Just wanted to say welcome to the site. You have been given a lot of good advice/tips from others who have been in the same situation you are dealing with at the moment. As for your employer, you would have grounds to take action if they get rid of you. You have just had major abdominal surgery, not a bug. Xx

Good idea.

Hello Yearling, the group has given sound advice here. Hang in there - things will get better! Just wanted to say I understand your plight - when my medical ordeal started, I was one month shy of being with my company for a year, therefore I got no disability pay through my company or FMLA. Also found out during my leave that because I wasn't employed a year, I would be put on COBRA - I had never been on a medical leave before and didn't know how these things worked. My COBRA is expensive, but luckily my employer offered to pay the difference in my premiums unless I was gone longer than 6 weeks, then I would need to pay the full amount on my own (over $2000/mo). That, combined with having no income during my leave, was the reason I went back after only 6 weeks. It was too soon. Shortly after I went back to work, I passed out in public and ended up back in the hospital - my body was forcing me to take a break, I had no choice.

Looking back, I wish I had listened to my mom who told me, "Don't go back before you're ready. Things will work out." Yet I was too scared of losing my job and my benefits and ended up back in the hospital. Would they have really fired me if I had taken an extra 2 weeks off? Doubtful - legal action likely would have commenced. Would things have worked out even if they did fire me? Probably. Was my mom right again? Definitely.

Please, take the time off that you need. I know this is easier said than done, but the saying is true, "If you don't make time for your wellness, you will be forced to make time for your illness." Don't end up in a worse situation because you are pushing yourself too hard.

Sending hugs.

Always take care of yourself and your family first; there are a million jobs to be had.

Yes, lesson learned. :) Thank you.