Short Gut Syndrome Parents' Support Group
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Diarrhea and diapering

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diaper rash woes
By: TinaS          (10:10 PM 11/11/2009)
Hi! My baby, Sam, is 7 months old and has 25 cm of small intestine. His stool is very acidic and we have tried almost everything to help his diaper rash. It is spreading now across his butt cheek and towards his back! We are currently trying lanolin ( pure lanolin ) plus lansinol which has some zinc and dimethizone ( sp ) added. We've tried many concoctions of zinc oxide, anti-fungals, barrier creams, etc. Is there anything anyone can recommend that has worked for their little one? THANKS! Tina
re: diaper rash woes
By: Emily H          (8:39 AM 11/12/2009)
Patrick is 12 months and had an ostomy taken down just 2 months ago. Before the ostomy was taken down, we had some problems with SEVERE skin breakdown around the ostomy from stool that was, well, more gastric acid than stool. The best advice I was given when we were treating the problem was that it was going to take more than one product. Since I'm still working on a bug that limits the length of posts, I'm going to take a few posts to describe what I know about different ingredients and products and how they're used. We currently use a method of layering to protect against diaper rash on Patrick's newly functional bum and we've had good success so far.
Barriers: iLex
By: Emily H          (8:43 AM 11/12/2009)
To start healing, you'll need to protect the skin against further damage. That's where barriers come in. There's one called iLex that was our savior in getting Patrick's skin better. I get it through my medical supplier or through the pharmacy at our children's hospital. You put it on and leave it for 3 days. Yes, it will start to look pretty gross on top... don't wash it off in that 3 days. Just patch spots that wear down and keep it covered in a thick layer of vaseline so it doesn't make the diaper stick, or worse yet, the two little cheeks.
Barriers: other
By: Emily H          (8:47 AM 11/12/2009)
My enterostomal team introduced me to another 3 day barrier called marathon. It's a bit harder to come by, but goes on thin and lasts for a few days. Only trick is it dries quick so you've got to work quick to apply it. Unlike iLex, it wears off on it's own... this is a mixed blessing. Easy to remove, but can wear off earlier than you want it it. There's another barrier method called "crusting" where you use a no-sting clear barrier like Cavilon's no-sting barrier wipes, then sprinkle stoma powder on top. (I've tried with talc and it's ok, but not as effective.) Layer this a couple of times, and leave it as long as it will last... wipe it down, but don't scrub it off. Just layer more on top of it.
Warnings about iLex
By: Emily H          (9:14 AM 11/12/2009)
iLex is a very thick barrier. It is hard to remove and if you aren't careful, you can cause new damage in trying to scrub it off. A good soak is generally the best way to get it off... and don't feel like you have to get it off all at once. Baza's cleanse and protect does a good job for soaking, as does Aveeno oatmeal bath, I'm told. Some people put a thin layer of aquaphor underneath it. This didn't work for me. Also, iLex is the one product that I don't recommend layering on top of. It will form a complete barrier that won't let anything through. Just put on the iLex and then a good 1/4 inch layer of vaseline on top. When you change the diaper, wipe down the top, and reapply vaseline.
Barrier Creams
By: Emily H          (8:52 AM 11/12/2009)
With severely "denuded" skin (this means that the top layers of skin are wearing off), you'll want a more durable barrier like the ones listed below first. However, if you're using crusting as your 1st barrier, you can then put another barrier cream on top. My favorite barrier cream is Critic-Aid. It's got zinc and dimethicone in it... It also has some powder that helps wick away moisture. In mind cases, critic-aid can work well alone. For Patrick, no product alone is enough.
Diaper Creams: Zinc Oxide and Dimethicone
By: Emily H          (8:57 AM 11/12/2009)
After you've got a good barrier in place, you can use some other creams to help promote healing. Sounds like you already know the value of zinc oxide and dimethicone. These two ingredients help promote skin healing. However, they rarely work as a stand alone treatment against anything worse than slightly red skin. You'll want to look for the highest concentrations you can find... and in a cream that's thick so it doesn't wash off the first time liquid stool touches it. In over the counter products, I like Boudreaux's butt paste. However, there are a couple of products I get through medical suppliers and my hospital's enterostomal team. They're virtually the same. One is called calmoseptine. The other is called calazine. They're super thick and also include calamine and menthol, which help soothe the sore skin. You might ask your GI to connect you with your hospital's stoma nurse and see if they have samples of these or other products.
By: Emily H          (9:00 AM 11/12/2009)
Kids with short gut are especially prone to yeast... particularly if you're using antibiotics for line infections or for bacterial overgrowth. Yeast is a red, raised rash... sometimes, but not always, the rash can have white heads. If you suspect yeast, you'll want an antifungal. Most over the counter antifungal creams will do, or you can ask your doctor about nystatin or other prescription antifungals. Yeast is a NASTY infection if it gets into the bloodstream, so if you suspect it at all on a kid with a central line, talk to your doctor right away and get it under control!
A note about cleaning
By: Emily H          (9:05 AM 11/12/2009)
One of the biggest mistakes I made with our skin breakdown issues was trying to wash the skin with wipes. If you've got a diaper rash outbreak, put the wipes away! You should be using water to wash the area to prevent further irritation of the skin. Pat, don't rub.. the last thing you need is to wipe off a layer of newly healed skin. Stay away from peritoneal cleansers, too, as they burn when you put them on denuded skin. These type of cleansers can be used to wash the top layer of iLex. That is the ONLY time I'd recommend them. There is, however, a product our hospital uses called Baza cleanse and protect. It's made out of pure dimethicone in a spray form. It cleans well, and it helps the skin to heal
Resources at your hospital
By: Emily H          (9:08 AM 11/12/2009)
There are probably some teams at your hospital that can help you out... maybe offer some samples until you get things healed. First of all, most hospitals have either an enterostomal team (a stoma nurse) and/or a wound team. Ask them how to deal with diaper rash... but also ask what they'd do for a leaky g-tube or an ostomy with bad skin breakdown. Remember, in a kid with short gut, what you're dealing with is as much gastric acid as it is stool. Also, you might ask if there are nurses in the chemo ward that have suggestions. Kids on chemo suffer from severe diaper rash, too.
By: Emily H          (9:10 AM 11/12/2009)
Once you get the skin healed, you can back off some on the aggressiveness of your treament, but you should still be layering with barriers and good diaper creams. Babies with short gut are going to have diaper rash problems. An ounce of prevention is worth a pound of cure... That's almost literal in terms of the amount of product you'll need to do the job here.
Homemade formulas
By: Emily H          (9:18 AM 11/12/2009)
There are some people who mix a homemade diaper cream formula for prevention, too. A combination of diaper cream, powder, and maalox. I've never tried it, but you can read more about it at
Call for other input
By: Emily H          (9:15 AM 11/12/2009)
Like everything with SBS, each child is unique... so this is the formula that worked best for me. I know others here have experience, too. What have you done to help with diaper rash, folks? What products do you like best?
Re: diaper rash woes
By: Jessica Taylor          (1:43 PM 11/18/2009)
There is one called butt paste or known as happy hiney cream talk to your pharmacist it is a perscription. My boy techniacly has 30cm only total of bowel ( he has had 2 step procedures) Let me know if u need more info.
By: SkaxiaNisee          (9:22 PM 12/24/2012)


Diaper Rash Helps
By: Renee          (9:53 PM 11/24/2009)
Our 2 year old son has had severe diaper rash several times. As long as the skin is not broken, many prefer to use a barrier like critic aid. I personally think that does more harm than good as it is very uncomfortable if the skin finally breaks and then it is very difficult to clean well. We use Aquaphor regularly at the first sign of redness on the bottom. We put it on very liberally and most times this takes care of it rather well unless we are going through a round of IV antibiotics that tear up the skin or unless he has C-diff. In these cases we have found that ILEX works best. I bathe Aaron daily as he has such frequent runny stools. A good soak in the warm bath will usually take the ILEX right off. Then I dry his bottom with a hair dryer to make sure it is very thoroughly dry. I re-apply the ILEX and just patch it throughout the day as needed until the next bath time. We have probably tried more than 30 kinds of creams and barriers, but this seems to work best for us and it is mush less expensive than some of the other things we have tried. ILEX is an ostomy cream and it has been rather difficult to find but we have been lucky to find it at the Primary Children's Med Center Pharmacy. It's around $8 a tube.
Diaper Rash Helps Continued
By: Renee          (10:04 PM 11/24/2009)
I neglected to mention above that you have to put vaseline or aquaphor over the top of the ILEX to prevent it from sticking to the diaper. You will need to reapply that at each diaper change. Also take your wipes out of the container and rinse them under warm water for several minutes to get all the perfumes and junk out of them then just stick them back in your container and use them as you normally would. We keep a supply of rinsed wipes and a jar of Aquphor near the diaper changing area. These we use on a daily basis. ILEX is used only when we get a severe break down and if we use that as directed, it will look much better in just a day. This has worked so well for us I threw away about 25 other products we tried from triple paste, butt paste and even the home mixed antacid formulas. If it works for you, let us know!
Re: Thanks Renee!
By: Emily H          (9:20 AM 11/25/2009)
I've been trying to come up with a practical way to get a home version of the "water wipes" they use at the hospital. What a perfect solution! I've got to second what you've said about ILEX. I use an assortment of other products to protect Patrick's skin while it's healthy... but at the first sign of breakdown, I pull out the ILEX. Can't wait to try aquaphor!

A tip that might help with the cost of ILEX: Patrick had an ostomy for a while and so we are set up to get medical supplies through Edgepark Medical, with the cost of medical supplies paid by our insurance. They carry ILEX, Criticaid, Calmoseptine, Cavilon and lots of other barrier products. You might ask your insurance company if they'd cover ILEX through a mail-order medical supplier.. We had a hospital social worker help us set up the rest.
One more thought
By: Emily H          (9:21 AM 11/25/2009)
Also, ILEX has a website and does sell the product by the jar. Never tried it, but I hear buying in bulk this way helps cut the cost.
Dirrahea and adult children
By: Diane          (11:39 AM 03/16/2010)
Hello. My name is Diane Grubbs. I adopted a son 17 1/2 years ago who had short gut syndrome. His parents did illegal drugs and alcholol. He was very small in stature until his sophomore year in high school. He did not have much trouble as a small child once we got the dirrahea stopped. During the summer before his senior year in high school he began having severe abdominal pain and vomiting. No one could find the cause. Finally, after almost a year of multiple trips to the emergency room, I insisted the Dr. go in and look around. The Dr. was not able to even get in with a laproscope. They had to open him up, do a major surgery removal of massive adhesions and close him up. That was almost one year ago, and know he has severe dirrahea and still has some pain on occasion. About every two month he ends up at the emergency room severly dehydrated.
Does anyone have any suggestions as how to avoid the dirrahea? He also is being told his spleen is enlarged. I don't know if the two are related or not. If anyone has any experience I would like to hear about it.
Re: Dirrahea and adult children
By: Emily H          (1:08 PM 04/12/2010)

I'm sorry. I just noticed your post didn't get a reply right away a month ago.

Diarrhea and short gut syndrome go hand in hand. A lot of prevention is focused on diet. I wonder if, as he's getting older, his diet is changing which is causing the return of the diarrhea. Adult or baby, though, the same principles for diet apply. Eat foods that are digested easily or slowly and that optimize nutrition. Avoid foods that are high in sugar and other things that contribute to the diarrhea. If you're having to make trips to the ER, it might be time to involve a GI with experience in short gut and a dietician who can help to find the right diet. They can work with you, too, to keep track of fluid losses and find ways to keep your son hydrated. They might recommend changes to diet like smaller, more frequent meals, adding a nutrient rich drink like Ensure, etc.

As for the spleen, my son also has an enlarged spleen. We've been told that it's a symptom of the liver damage caused by his TPN. To my understanding, this shouldn't have any relationship to your son's diarrhea. The only problems we've had as a result are occasional instances where his blood counts get low because of the way his spleen behaves when he's fighting an infection. When he gets sick, I'll sometimes notice that his belly looks swollen and that he's paler than usual. This usually means that his spleen is reacting to the illness by "sequestering" platelet. There's not much to be done to help in this case, but it's something we keep an eye on so he doesn't become dangerously anemic. A good GI with experience in Short Gut Syndrome could also address this issue for you. GI's deal with liver problems and their side effects.
Managing Diaper Blow-outs at night
By: Renee          (10:06 AM 04/12/2010)
We have been fortunate to get disposable underpads or Chux like the hospital uses through our homehealth company. The problem is, insurance will only pay for about half of what we need in a month (currently we are using between 200 and 250 in a month) They are available at larger drug stores such as Walgreens. Look where they have adult undergarments. We layer these on the crib. Then I went to Walmart and bought some inexpensive flannel. I cut the flannel in one yard pieces and just simply sewed the raw edged under. I layer one underpad across the middle of the crib, then cover it with a piece of flannel. The flannel is wide enough to tuck into the sides of the matress and rarely does it come out (use darker fun prints of the flannel as they will get stained pretty good, but it's better than sleeping directly on the paper underpads.) This was enough when our child was a baby and it saved me washing several sheets and mattresspads for a night. As our baby got older and moved around more, I layer two additional underpads, slightly overlapped to contain the huge puddles. As he got older and insisted on a pillow, it does help to lay a Chux about a third of the way onto the pillow. This prevents you from having to wash pillows everytime too, but be warned, the flannel gets gross and now that our child is three, and moves around a lot, we sometimes wash four pillows and pillowcases and several blankets a night and sometimes he has moved all the underpads and we end up washing all the bedding too. Short Gut kids do come with a lot more laundry! I also use some thick flannel covered rubber pads the size of the crib mattress (I bought these at Penneys in the infants department years ago, they are similar to those rubber lap pads you used to use with new borns) I put these under the fitted sheets to protect mattresses. If you can't get disposable underpads, these would probably work over the sheets just as the chux do but would increase your laundry and you would have to have several. If any one else has any other ideas, I'm all ears, as this is one of the most distasteful tasks of parents with a short gut kid. Just remember, this too shall pass as they get older and learn to control their bowels.
Re: Managing Diaper Blow-outs at night
By: Emily H          (1:11 PM 04/12/2010)
Here's a page with suggestions from the Short Gut Wiki
Diaper rash
By: pjm68          (10:14 PM 06/13/2010)
I am a foster parent and I am caring for a child with Short Gut. We have been very fortunate with not having any problems with skin breakdown. My child has aprox. 6-10 BM'S per day, if not more. I do very, very frequent diaper changes. Sometimes, 2 or more in an hours time. I am also up 2-3 times during night, to change diapers. When the bottom starts looking slightly pink, I have a RX for "Magic Diaper Cream". It is a compound of different ingredients and it works wonders! I get this RX filled at Walgreens. I have only used it a handful of times, in the 4 1/2 months I have been caring for this child. The doctor comments every time we see him, on how well the bottom looks.
Lidocaine for diapering?
By: Renee          (3:39 PM 02/08/2011)
My four year old son has had quite a few issues with C-diff. We have found the best antibiotic to use is Rifaximan or (Xifaxan) is what the pharmacy label says. It is not yet approved for pediatric use and is only available in 200mg pills. We give Aaron 1/4 tablet 4 times a day when he has C-diff and kick that back down to 2 times a day as a maintenance drug. When he is hospitalized, the first thing all the residents or other doctors want to do is change all his medications and put him on the same old ones known to treat this. This makes me crazy as they plain do not work for Aaron. Xifaxan is a drug they use to treat traveller's dirrahea but it works great to combat C-diff. Recently we have also had an issue with trying to potty train Aaron. He holds everything in and says it hurts to "blow-out". Our Doctor prescribed Lidocaine which I mix 1 to 1 with Regular A&D ointment. We apply a little to his anus which deadens the pain when he bears down. So far it works. Aaron always wants me to put a little on and he likes me to try to push a little up his anus too. He says it feels better.
bare bum
By: Marcy          (10:41 PM 02/09/2011)
As an infant my daughter bum was raw from her constant dirrahea so i would make a point to put her on a soaker pad and let her open sore get some air so they could heal and at least seal over. I finally after almost two year came across a second skin type of bandaid that covered the opened sore but allowed it to breathe and heal. best thing ever.
Huggies or Pampers
By: Danielle K          (11:52 AM 02/27/2011)
My son just made it to 12 months and I'm still searching for the right diaper to keep everything in. What does everyone suggest? I had been using Huggies but the last package I bought had a different look to them and even the urine seeked out of them, let alone the poop. I just bought a package of Pampers Cruisers and they seemed to work, but I'm not sure if there is anything better out there.
Re: Huggies or Pampers
By: charlyn          (10:07 PM 02/28/2011)
For my son, he's 14 months, I use Huggies, snug & dry, size 3. I think it's thicker than luv's and one of the pampers (sorry, I don't remember which one!). He still has occasional leaks. They only happen when his diaper is full of pee and his poop has no where to go or overnight when I oversleep and don't change it. I check it OFTEN and that decreases his chances of overflowing. Usually, I'm on top of it because if not he's the one paying for it with soiled clothes. :p I hope this helps and it's worth the try. P.S. I've only bought the Huggies at Sam's Club so I don't know if they're the same in construction as the ones in the smaller packages.
Re: Re: Huggies or Pampers
By: Danielle K          (10:20 PM 02/28/2011)
Thanks Charlyn for the reply. I used Huggies snug & dry for months and they used to work great! But the last box I had the diapers had a different look to them and didn't hold anything. Even a small pee would leak right through and I'd have to change his clothes. Maybe I just had a faulty package or something. I bought Pampers Cruisers size 3 a couple days ago and fell in love. Despite the look (being very thin) they hold a ton! My son is actually sleeping through the night and skipping that middle of the night change/bottle. It even holds in that runny poop. :D
Cuties, Huggies, Pampers-It doesn't matter!
By: Renee          (10:10 AM 04/20/2011)
I'm surprized to hear that you are trying to find a diaper that doesn't leak! My son, whom we fostered then adopted almost a year old and is now four years old, leaks everytime there is a "blow-out" the diapers simply are not designed to contain them. We layer those disposable underpads they use in the hospital on his bed at night to help contain the mess so we aren't having to change bedding 4 or 5 times a night. Everyone knows when he poops as it is very liquid and it is immediately gushing out the sides or even over the top of the diapers, running down his legs and puddling on the floor. We finally have gotten him to let us know when he need to "blow-out" during the day and he's gotten better at sitting on the potty for those, but overnight is a problem as he is hooked up to so many things, it would take several minutes to pause the pumps and unhook him long enough to go to the restroom- needless to say this has not happened. We do double diaper at night and I get up to change him at least every two and a half to three hours so he isn't soaked thus not allowing a "blow-out" to have anywhere to go. If you child doesn't leak everytime, consider yourself lucky! I envy you!
By: Audrie C.          (10:38 AM 09/02/2011)
Hello, my daughter is a short gut baby and she recently got off the tpn and had her line removed because of constant trouble with the line. She is tolerating 160 mls. of formula without spitting up but its been about 3 days now that she's been having really loose stools. My doctor said its her intestines getting used to the large amount of formula she just started to receive but i'm just wondering how loose is too loose?
By: jessica o          (9:03 PM 09/20/2011)
my daughter is 2 and she has the same problem. have they tried giving him prevacid to help with the acid? also cholestyramine in aquaphor really helps with the acid. the dr writes a rx for this an it really helps.
diaper rash and containing blow outs
By: Jenn          (5:37 PM 06/21/2012)
Hi, I am new to this site. I have a son with SBS who is 5 and I am also a nurse. He has had SBS since age 6 days due to NEC. The best two creams I have come across for diaper rash are Calmoseptine and SensiCare. Calmoseptine is usually used around gtube sites but works great for the SBS rash. The SensiCare (made by ConvaTec) is better suited for when the skin begins to breakdown. It is a very thick paste that you don't want to wash off fully each diaper change. Just clean off the top layer that is dirty and reapply where it is wearing thin. If you scrub it all off you will cause more damage to the skin. After a few days I usually stop reapplying until it has all worn off. Calmoseptine can be found at most pharmacies OTC but you actually have to ask the pharmacist for it. SensiCare has to be ordered, or you can buy it at places like Another thing that helps my son when he has a diaper rash flare up is Baby Aveeno bath soaks and homemade wipes. I use a bunch of those very thin newborn wash cloths placed in a plastic container filled with filtered water and a VERY small amount of baking soda. I can keep them as wet as I want or wring them out to my liking, then wash and reuse. IMO the baking soda helps to neutralize the acid from the poop, but of course always ask your doctor. :)
containing blowouts
By: Jenn          (5:54 PM 06/21/2012)
I forgot to add my trick for containing blowouts in the last message... I use some type of fabric underpad at home. Whether it is a towel or fabric Chux pad (Like the ones used at the hospital. You can get them at medical supply stores or online). I don't like to use disposables because my son is already hot natured and we live in Florida. he seems to rash-up easier when keeping the heat in with multiple layers of plastic. When we go out, I use a waterproof diaper cover that has elastic around the waist and legs. It will not ALWAYS contain EVERYTHING. Especially very liquid stool but it sure helps a lot. There are even diaper covers that have cloth bands around the openings if the elastic is too irritating for your child.
Hope this is helpful to someone!

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