Hello! Painful Stoma Retraction Advice Needed

Hello! I am April, and I've had a colostomy for 2 years now. I live in sunny southern Utah! I had lymphoma twice, and my body didn't like the chemo the second time around! It caused a perforated colon with lots of infection and ultimately a colostomy. I think “Fanny” and I get along great for the most part, but occasionally she gets retracted, and it is very painful. This latest bout has been the most painful yet. I wear a convex pouch; I massage around the stoma to try to get her to come back out. Typically, she protrudes a good inch, and I've been told she is a beautiful stoma lol! But now she is flush with my skin. This has been going on for about 3 days this time. It is very painful when having output, and it makes the whole area around my stoma sore. It will be sore to the touch for days, but it especially hurts during output. I am not the best at drinking water, but I am being much more aware of that and trying to drink close to a gallon daily. I take fiber gummies occasionally, but that hasn't been helping this time. The output is sticky and a little thicker than it has been. Do any of you have other suggestions on how to manage this situation and how I can get the pain to stop besides taking medication? Thank you for all the topics and suggestions. This seems like a great group and is very informational!
Thanks so much, April

Is the convex wafer making the skin around your ostomy sore? It puts pressure around the stoma, so that could be why the skin is so sore. As far as output goes, have you tried just going on all liquids for 24 hours? Chicken broth (chicken broth loosens me up, and so does apple juice), water, juice, nutrition drinks, jello?

Thank you so much for the suggestions! I have not tried a liquid diet. I ate some more salads the past couple of days thinking the fiber would help, but I read that sometimes raw greens can cause a partial blockage. I changed my pouch today to a flat wafer, so I will see if that improves it at all. I also used a cut-to-fit instead of my regular pre-cut size and put a convex barrier (the Eakins ring - I can't remember what it's called) next to my skin. But you may be right; maybe the convex is hurting things. I have not actually ever needed a convex before, but I went to an ostomy group, and they suggested using a convex wafer, even if you don't have a flush or retracted stoma. So I've been using that for the most part.

I will say when it comes to wafers, use your own discretion. I don't know why they say to use a convex when you don't need to. Not saying you, saying the group and why that was a suggestion. And I am sure I will get backlash on here for saying that, but I don't care. The convex can be rough for some people. If it's needed, when I was fully retracted, I tried a convex and it bruised me black and blue, and it hurt to have it on and was for a while after I took it off. But yeah, I would try liquids for a day; you could have clumps that are hard to get out. Me, I like the cut-to-fit personally, in my opinion, and for me, I get a better accurate fit for my stoma, the size, and especially when it comes to the shape. You said you have a colostomy, right? Not an ileostomy? I saw you're from Utah; my cousin lives there, Cedar City.

I've noticed my colostomy stoma retracts frequently, and it seems to be related to when it's about to spew. Since your output is thicker than usual, you may be constipated?

I imagine constipation could cause pain. I've only had my colostomy for about 5 months, and I haven't been really constipated yet. So I don't know for sure.

I notice that changing colostomy output seems to be very difficult.

I'd be careful to make sure you are getting enough fiber. I was put on a low-residue diet to treat diarrhea, and they expected it to slow down my system. You need fiber to trigger the colon to move things along.

Coffee is a reliable laxative for me. I always have to be careful not to drink too much. That's probably just me, but it might be worth a try.

Miralax is a gentle laxative if you decide to go that route. I used a stool softener (generic Dulcolax) prior to my surgery because I was getting blocked up. That was very helpful, but it took a few days to work.

So all of this is very speculative and possibly not that helpful. I hope you find something that works for you.

My Ostomy Journey: Ryan | Hollister

Thanks for starting this discussion. I'm a month and a half in, and my stoma seems to be in retraction mode as well. It's causing skin breakdown and discomfort. I've also been told to use the convex, but it is really uncomfortable, especially the first few hours.

I have been using prune juice to help with consistency and take about a half a cup a day, but start small first to see how it goes. I made the mistake of having a full glass and got sooooooo sick. Ugh!

Thank you! I'm in St. George, south of Cedar City. I drank a buttload of water yesterday and the day before, and it feels a lot better. Still retracted a bit and still sore with output, but not as much. I bet staying extra hydrated is the key. I'm ordering more cut-to-fit samples. Have you tried the moldable Convatec ones?

Thank you for your suggestions! I'm going to try a magnesium supplement because I read that it can help loosen things up a bit. Thanks again, this is a great supportive group!

Prune juice is a great idea (although I can't stand it😖)! I wish I could help you with retraction suggestions. It took me so long and so many different samples to find a product that works for me. And even still, I'm trying new things because it seems Fanny is always testing me, lol. I think it's safe to say ostomates will constantly be searching for the perfect fit and product because the stoma seems to change with age, weight, dietary choices, etc. Never-ending changes.

Hey there, glad water helped a bit. Have you tried juice or chicken broth? I am allergic to Convatec and all others but one brand. I can only use one brand, unfortunately. With using the flat wafer, did it feel any better around your stoma?

It seems strange advice to wear a convex pouch if the stoma is not retracted or flat against the skin. 🤔 You mentioned sticky output; are you eating hard candy, chocolate, cough drops, or anything sweet? 😊 You are doing a lot of guesswork. If you are not already, you should keep a journal of what you eat and the effect it has on your stoma output — there are mobile apps you can use for this purpose, such as mySymptoms or my Ostomy Journey. 😉 When you remove your barrier/wafer/flange, has output leaked underneath? Since colostomy output is not as corrosive to the skin as ileostomy output, your skin can become sore without showing any abrasions. You didn't reveal much about what you were eating, yet you mentioned you were eating salad and/or fiber gummies. Why did you mention your fiber intake? 🤔 Please know fiber is an "umbrella term" that covers both soluble and insoluble fiber types — your needs dictate which type you may need. 😉 Finally, you say you are trying to drink a gallon of water a day. That is a lot of water without drinking some type of rehydration drink. There are good rehydration drinks available:

1. Dioralyte, Hydralyte, and Pedialyte are ideal for mild to moderate dehydration in everyday scenarios.

2. Ceralyte and WHO ORS are better suited for severe dehydration due to higher sodium content and global accessibility.

3. DripDrop and Liquid I.V. focus on rapid rehydration for active individuals, with added nutrients like zinc or vitamins.

4. Liquid I.V.'s higher osmolality makes it less suitable for severe medical dehydration but excellent for fitness and travel recovery.

5. WHO ORS remains the gold standard for severe diarrhea globally due to its affordability and effectiveness.

ConvaTec's moldable appliances are excellent. Other than perhaps cost, I don't know why patients are not initially given moldables. Now that I think about it, if your pre-cut colostomy barrier/wafer/flange is too tight, it can cause pain. The moldable gently conforms to your stoma — I highly recommend you give it a try. It has a tape boundary that you will need to determine if it adheres to your skin or if you are allergic to its adhesive. The hydrocolloid tends to break down after 4 days of wear time.

I didn't try the chicken broth because the water seemed to help. I just put on the cut-to-fit flat wafer with no Eakins ring, and so far it does hurt a little upon output. I am going to try the moldable pouches and see if that helps. Thank you for your suggestions; I really appreciate the support.

Thank you so much for your reply, and WOW, you gave a lot of useful information!🤯

First of all, I agree with you about not needing a convex pouch if the stoma isn't retracted. I often look to others for advice and can sometimes be a little too impressionable. That being said, I am working on listening to my intuition more and doing what feels right instead of doing what other people suggest. It's MY body, after all. But that's another topic for another day, lol.

Secondly, sticky poop - yes, I eat sweets. Not a lot, but I do have a lot of sugar substitutes because I have quite the sweet tooth, and I'm cutting back on actual sugar for various health reasons. I can't seem to get away from sweets, though, so I gravitate towards the “no sugar added” type. I think those might be less healthy than real sugar; however, I find that when I eat sugar, I am addicted and want more, more, more, but when I eat the “no sugar added,” I do not get more cravings for sugar. So that's why I eat those. Has sugar affected your output? Thank you for the food journal app ideas; I will happily try both of them out.

I mentioned my fiber intake because I am under the impression that eating more fiber can help with normal bowel function, and I assume that helps with a stoma as well. Although that is also a confusing topic for me because some say to eat more fiber, and others say to eat leafy greens sparingly and that they can block the stoma. So I'm not sure about that.🤷🏼‍♀️

Why do you say to drink rehydration drinks even if I'm drinking a gallon of water? It seems like that should hydrate me completely, although I clearly do not know much about nutrition.😉 I have heard coconut water is also a good rehydrator.

Again, thank you for your very informative reply. It is so helpful to have support from people who actually know what ostomies are all about!🙌🏻

I talked to a Convatec rep yesterday, and they are sending me some moldable samples. I think that might be the answer for me (in addition to drinking more rehydrating liquids). I recently (2 months ago) had an issue where my stoma ballooned up like a mushroom, and I think it was due to the wafer being too tight. It's kind of crazy - I think I have a handle on my stoma because I've had it for 2 years, but then something happens to make me question everything, and it's like I have to start over with research and questions again. The body is amazing and keeps us on our toes!😉

Hydration is about both water and electrolytes. Plain water does not provide electrolytes, and too much plain water can actually flush electrolytes out of your system.

My urologist recommended that I include 1 Gatorade or similar per day along with my water to improve hydration. And I have 90% of my colon left. Someone with less colon or an ileostomy will need more.

And I can't drink Gatorade, which sucks, nor ORS solutions. Gatorade, even when I mix it with water, pushes everything out of my system and dehydrates me. I roll nonstop. I was drinking ORS, but I have a rare medical condition, so I can't. I have to get everything from food and nutrition drinks.

Sugar and sugar substitutes are something you should track in your diary in order to determine how your ostomy output is affected. Sugar substitutes require some explanation; I'll try not to bore you.

• Sweeteners can be classified as carbohydrate (caloric) and noncarbohydrate (noncaloric) sweeteners. Caloric sweeteners include sugar and sugar alcohols such as erythritol, sorbitol, mannitol, xylitol, maltitol, and actitol — most end in "-tol"; there are a few exceptions.
• Noncaloric artificial sweeteners or non-nutritional sweeteners (NNSs) are popular substitutes for added sugars in foods and beverages due to their low caloric content and sweetness. Non-nutritional sweeteners (NNSs) can be classified into artificial sweeteners (ASs) when chemically produced in the laboratory, and natural sweeteners (NSs) when directly extracted from plants. ASs include aspartame, saccharin, sucralose, neotame, acesulfame-K, and advantame, and NSs are mainly represented by stevia, made from extracts.
• Artificial and natural sweeteners are characterized as non-nutritional sweeteners (NNSs) since they do not contain calories.

• The main downside to sugar alcohols is this: when taken in high amounts, they can cause gastrointestinal (GI) problems, such as abdominal pain, diarrhea, or loose stools. Heavy consumption of sugar alcohols can lead to bloating, diarrhea, and gas because they are not fully absorbed in the small intestine. Polyols (sorbitol, mannitol, xylitol, maltitol, and erythritol) have known laxative properties and are potential causes of diarrhea.

• Based on tolerance for ostomates, the ranking of sugar alcohols from most to least comfortable is as follows:
1. Erythritol: Best tolerated, mostly absorbed in the small intestine, minimal gastrointestinal side effects.
2. Mannitol: Generally well tolerated in moderate amounts, but can cause issues if consumed excessively. Mannitol lingers in the intestines for a long time and therefore often causes bloating and diarrhea.
3. Isomalt: Better tolerated than some others, though it can still cause digestive discomfort in larger quantities.
4. Sorbitol: Can lead to gastrointestinal issues if consumed in large amounts; moderate tolerance. It has less of a tendency to cause diarrhea compared to mannitol. It is often an ingredient in sugar-free gums and candies.
5. Lactitol: Similar to sorbitol but may cause more digestive distress in some individuals.
6. Maltitol: Often causes bloating and diarrhea, especially at higher doses.
7. Xylitol: Can lead to significant gastrointestinal discomfort if consumed excessively.
8. Glycerol: May cause gastrointestinal issues and is less commonly used.
9. Ethylene glycol: Not suitable for consumption and poses health risks.

• For ostomates, here's a ranking of those natural and artificial sweeteners from potentially most to least comfortable:
1. Aspartame: It's not fermented, so it usually doesn't cause gas or diarrhea. Commonly used and generally tolerated, though some individuals may experience sensitivity.
2. Saccharin: Similar to aspartame, it's not fermented and generally well tolerated. Some may tolerate it well, but it has been associated with gastrointestinal issues in others.
3. Stevia: A natural sweetener that's usually fine for ostomates. Generally well tolerated, being a natural sweetener with minimal gastrointestinal side effects.
4. Sucralose: Can sometimes cause gas or bloating in sensitive individuals. Often well accepted, with fewer reports of digestive issues compared to other artificial sweeteners.
5. Acesulfame potassium: Some people report digestive issues, but it's less common. Generally tolerated, but some may experience gastrointestinal discomfort.
6. Neotame: Similar to aspartame but much sweeter, so less is used. Similar to aspartame, but less commonly used; tolerance may vary.

• Even though I have listed the ranking, it is very subjective. Everyone reacts differently, so it's best to try small amounts of any sweetener first to see how your body responds.

• Artificial sweeteners generally do not have the same laxative effects as sugar alcohols.

• The body was designed to digest sugar (glucose/fructose), but sugar can lead to sticky ostomy output. High-sugar foods and beverages, such as sugary drinks, desserts, and sweets, can pull water into the intestines, potentially thickening the stool and making it stickier. Additionally, excessive sugar consumption may alter hydration levels and impact stoma output consistency.

I, like you, am prone to wanting sweets. For the most part, I stick with low-residue desserts. Low-residue dessert options are recommended for ostomates because they minimize fiber intake, reducing bowel activity and the risk of complications such as blockages, excessive gas, or increased stoma output. These desserts are easier to digest, promote better nutrient absorption, and help maintain stool consistency. By avoiding high-fiber ingredients like seeds, nuts, and raw fruits, low-residue desserts provide a gentler option for the sensitive digestive systems of ostomates.

Sampling of low-residue dessert options for ostomates include:
• Plain cakes and cookies: Angel food cake, chocolate chip cookies, and sugar cookies.
• Puddings and custards: Butterscotch pudding, banana pudding, and tapioca.
• Ice cream and sherbet: Avoid those with nuts or fruit chunks.
• Canned or cooked fruits: Applesauce, canned peaches, or baked apples without skin.
• Other desserts: Marshmallows, gelatin, and plain cheesecake.
• Avoid high-fiber ingredients like seeds, nuts, coconut, and dried fruit to prevent blockages.

NOTE: Blockages are more of a problem in the immediate aftermath of ostomy surgery and for those with ileostomies. Also, many of the GI issues with sugar alcohols are not a problem for ileostomies since there is no colon for fermentation to occur.

Sorry, you can't drink ORS since the WHO formulation is the gold standard for severe dehydration. So, I guess you have to remain diligent in drinking DripDrop, Liquid IV, or something similar. If you get severely dehydrated, then you have no choice but to go to the ER for an IV. 🤔

A traveler drip drop and liquid IV are ORS solutions. I can't drink those. So I try to get the nutrients, potassium, and sodium from food, and I make sure I drink my water. I will have juice as well and nutrition drinks. And yes, when I get too low, I have to go in for a bump up with IV fluids.

You are correct, Beth. I tend to ignore DripDrop and Liquid IV as ORS since they tend to add additional electrolytes and vitamins that I don't need. If you are not careful, they can put you over the limit — my magnesium and zinc levels are fine due to other medications I take; therefore, I don't need DripDrop providing me added magnesium and zinc. And Liquid IV provides an excessive amount of unnecessary B vitamins that I don't need. I want my rehydration solution to provide hydration — nothing more, nothing less. I tend to equate, incorrectly, the term ORS with the standard WHO ORS formulation. I'll try to be more careful with my terminology. Thanks for pointing this out so others will not be confused. Keep me on my toes 😊

Hey, what works for one may not work for the other. And we all need the same, yet all need something different. For example, my sodium levels stay pretty good intact when it comes to my potassium; I lose potassium more than anything else, so I have to try and keep that up. And for me, apple juice and potatoes do the trick. Now, someone else might need their sodium or something else. And yes, like with any ORS and even foods, we have to find that balance. With an ileostomy, we tend to lose a lot very quickly, and that needs to be replenished more often. And I do agree, and it does say on the box of the DripDrop and Liquid IV not to exceed two in a day. Not sure if people read that part, lol. And I wasn't trying to point you out like that; hope you didn't take it that way. I probably should have put a smiley face or an lol.

Hi

I'm so sorry to hear about your pain. I would recommend less fiber and softer foods that wouldn't be so harsh on the output.

Hope you can resolve your issue.

Hi, Aprill, I have been in St. George a number of times. Is that where you are located? I have a continental tide, which is different from the standard colostomy. But I do get soreness around the opening for my Kock pouch. I have been using Chamosyn, and it appears to work. I hope this tiny bit of advice helps a little. Warm regards, Tom.

Wow. How did you get so smart? 😉 Thank you for that explanation! It wasn't boring at all, and I learned quite a lot. I will refer back to that often. Thanks again!

Hello Tom, thank you for your reply. Yes, I am in St. George! I will try Chamosyn. I haven't heard of that, so I will look it up. Thank you again!

Coffee works for me. My pouch fills fast! I get my Starbucks to go! As I will need to go soon! It is important to chew veggies like 30 times. It can plug you up.

I got what you were saying and was glad for the correction. 😊

Hello, my name is Dawn, and I've had my stoma since 2017, but I have had to have it moved to the right side of my body and then had another revision this January. I'm chiming in here because I suffer from great discomfort whenever stool passes through my stoma. None of the products that I use are too tight around the stoma. Does anybody else have this problem, and if so, could you please share with me your experience?

I can think of at least three possibilities. The three that immediately come to mind are parastomal hernia, partial blockage, or chronic constipation. I am assuming since your ostomy was moved to the right side that you may have a colostomy. Persons with colostomies are more prone to parastomal hernias than those with ileostomies—probably because of the larger opening through the abdominal wall. You have had a re-siting and a revision recently, which has further weakened the abdominal wall. If you notice bulging around the stoma, then it is likely a parastomal hernia. Is the output watery and less than expected? If so, you may have a partial blockage. If your stools are hard and dry, then you may be dealing with chronic constipation. For chronic constipation, you should increase your liquid intake and take an insoluble fiber like psyllium (Metamucil).

If none of the three seem to be the culprit, then you may need to have an MRI rather than an X-ray or CT scan to diagnose the problem. Doctors/insurance companies are reluctant to order an MRI due to the cost, but if this pain persists, you may have to become more insistent.