Hand to Hold's Official Blog: Written by Parents for Parents

10 Tips for Your Baby’s Colostomy Care

Caleb, two months old, with his colostomy.

Colostomy care.  Not exactly covered in any parenting class.  My son Caleb was born with VACTERL and required a colostomy at two days old.  He had his reversal at nine months old.  These are the tips and tricks I learned about colostomy care and bag changes.  Always discuss any change to your recommended or prescribed treatment with your health care provider.

  1. Find what works for your baby.  Start by checking out the Hollister and Convatec websites.  There you will find information, instructional videos, printable pamphlets, FAQs, resources, supply catalog, and you can order free samples.  Your medical supply company will have a catalog and should be able to provide free samples as well.  The rest is trial and error.  We tried both pediatric starter packs from Hollister and Convatec, ordered free samples of products we thought might work, and tried different combinations before finding the right one for Caleb.  It is tedious, but it is worth it.
  2. Speed and preparation.  Changing a colostomy bag in the NICU is one thing; changing a colostomy bag at home alone with a squirmy baby is another.  If you have other children, they will learn this is the opportune time for mischief.  Cut down on the steps required to change the bag.  Pre-cut the holes in the wafer, pre-stick the bag onto the wafer (if using a two piece system), and pre-feather the wafer.  Then mash the barrier ring onto the wafer.  Open anything you need open and have all your supplies within arms reach.  When it comes to changing time: toss the old, wipe with saline wipe, pat dry, apply skin protectant, apply barrier-wafer-bag combo, tape, and done.  Make packs of the wafer-bag combo, saline wipe, skin protectant wipe, barrier ring, gauze, and tape.  Put a few in the diaper bag and extras in each car.  Hand sanitizer and extra clothes are a must.
  3. Dial soap and saline wipes.  Regular baby soap and wipes leave a film that make it harder for the wafer to stick to the skin.  Washing the stoma area with Dial soap or cleaning with a saline wipe will not leave a film and will help the wafer adhere better.  Dry well.
  4. Filter.  A bag with a filter helps let the air out and prevents it from blowing the colostomy bag up like a balloon.  Genius.
  5. Cut outside the lines.  Many wafers have a printed circle where you should cut the hole for the stoma.  For most wafers, the hole can be placed anywhere and the wafer can be trimmed to a more suitable shape – as long as the bag can completely fit on the wafer.  If your baby has a mucus fistula, it may be located very close to the stoma for the colostomy.  Positioning and trimming the wafer along with strategic placement of the hole is key.  Bonus: a stoma and mucus fistula should not be bagged together.  If the mucus fistula does not produce a lot of discharge, a band aid is sufficient and the wafer can cover the band aid (reinforce with tape as that portion of the wafer will not adhere as well).  For those fistulas that require a bag, consider using one large wafer, cutting two holes in it, then bagging separately or try positioning, trimming, and strategically placing the hole on each.
  6. Feather.  A flat wafer, though flexible, has a hard time sticking to a round baby belly.  Feathering, where small cuts are made along the outside part of the wafer, helps the wafer mold to their belly.  Think of the cogs on a wheel- make small cuts from the outer edge going toward the inner edge- without cutting into the bag (pre-cut the hole and place the bag on the wafer first).
  7. Heat.  Heat helps the wafer stick.  I would stick the wafer-bag combo in my bra while cleaning him up to warm it up.  Weird, yes.  Works, yes.  So will a heating pad on low, disposable hand warmer, your hand, or a warm rice sock.  Do not forget to toss the disposable hand warmers in the packs (see #2 above) when it is cold outside.  Warm the wafer before applying, then again after taping.  Bonus: heat helps with gas pains.
  8. Wound care ostomy continence nurse (WOCN).  Best phone call I made was to establish care with a wound care nurse at our local pediatric hospital.  I learned from an experienced expert in ostomies and she was able to advise treatments for when Caleb’s skin around the stoma was irritated.  Healthy skin is in.  The area around the stoma will be reddened if using a wafer, but should return to normal color after several minutes like after giving your baby a bath sans bag.  It takes a while for that newborn baby skin to become accustomed to the wafer.  Keeping the skin around the stoma healthy is crucial.  We found that a barrier wipe (no-sting was our preference) helped; there are also various powders, sprays and wipes that can help protect the skin.  If the skin looks infected or has a rash, seek medical advice as there are prescription anti-fungal and antibiotic powders that can be used to help heal the area.  Sometimes airing it out is the best.  Clear your schedule, lay down lots of towels, and be prepared to dab away at poo.  A hair dryer on low setting can help too. This too shall pass.
  9. Empty frequently.  A leaking bag of poop is never discreet.  Empty more frequently on airplanes.  Trust me on that.  Bonus: if your child has watery diarrhea, a tampon can help absorb the water and decrease the sloshiness (best used on lock and roll bags).  Invention is the mother of necessity.
  10. Squirm proof.  Preface: I had the child who at six months pulled off his bag and flung it across the room.  During a doctor’s appointment.  That type of guerilla warfare requires a multi-layered approach.  First, get a good seal and tape the wafer down.  Get an elastic bandage (like Coban or an ACE bandage) and cut it to where it can be wrapped around the waist twice, helping secure the bag.  There are also ostomy holders, belts, and pouches that can be bought. Then use a diaper a size larger that can comfortably cover the colostomy bag.  Put baby in a snug onesie (a size smaller may be needed).  Avoid waistbands as they can tug or pinch the bag in two.  Distract.  Keep little hands busy.  Hope for the best.

Bonus tip: Teach someone else to care for your child’s ostomy and how to change it.  You may be surprised by who steps up and has a hidden talent for colostomy bags.  In the least, teach them that a diaper worn sideways and changed frequently will work until you can properly change the bag.  Children have ostomies for a reason – there is some stress in your life from dealing with your child’s medical condition.  Being able to safely leave your child in someone else’s care, even if briefly, helps deal with that stress, even if a little.

Our time with the colostomy is done.  We were lucky to have figured out the right combination for Caleb and he could wear his bag for a week at a time.  There were days I never thought that could ever happen.  I wish you and your baby have much success on this journey and that these tips were helpful.

If you have mad colostomy skills, please share your tips and tricks with us by commenting below!  Thanks!

Bea Smith About Bea Smith

As a nurse, Bea Smith (TX) found the roles reversed when her son was born with a congenital condition, imperforate anus (IA); he had no anus. He had surgery at two days old, spent a week in the NICU and has had three more surgeries to create an anus and to correct his spine. Diagnosed with VACTERL, an association of conditions, he also has kidney/bladder problems and had a tethered spinal cord. Bea is the mother of two daughters in addition to her son. She is adjusting to her role as a rookie special needs mom, balancing family, friends and work with a little humor and a lot of faith, chronicling it all on Caring Bridge.

Comments

  1. This is brilliant, Bea! And smart… And sensitive… And funny. Thanks for sharing your hard-earned knowledge with humor and wit.

  2. Being a parent gives you the education you never knew you wanted. Our daughter had an ostomy bag for over two months in the NICU. We were thankful to have it reversed before she came home. By the time it was reversed, the bags were coming off multiple times a day. Unless her primary nurse was with her, I knew she would have at least 2 bags a day, if not more. Feathering might have helped. It seemed to always start coming loose at the same point. I’ve never been so happy to change a poopy diaper as when she finally had her first at almost 3 months old!

  3. Coloplast Brava Elastic Barrier Strips changed our lives! I encourage anyone who is living with a colostomy or a child with a colostomy to check them out. They really help the bag to stay on longer.
    http://www.us.coloplast.com/products/ostomy/accessories/elasticbarrierstrip/

  4. If you have a wipey warmer I put the colostomy bag on top to heat up. Works great. It’s best to precut all supplies as noted above def helps.

  5. What an informative post! There is so much to learn form this especially on the proper care for baby’s colostomy. Awesome! When we talk about babies having this colostomy, proper attention and care is indeed so important in order to make the baby safe and free from irritations especially to the skin the surrounds the stoma. Parents or the one in-charge should always give proper cleaning and hygiene.

  6. CHARLENE THOMPSON says:

    my son was born with an impeforate anus… it was so hard at first to get his bag to stay on. Oftentimes the bag would leak in embarrassing place like church. One night I decided to cut a pad and place it inside the diaper with the cotton part facing the stoma and it worked wonders.. helped me save a lot of my babies cloths.. I hope this helps someone!!!

  7. Hi everyone! I just recently gave birth to my daughter at the U of M and she was born with an in perforate anus.. she had colostomy surgery and has since been sent home. My husband and i are still trying to see what works best for her, we have had issues with some leaking and found that a blow dryer seems to help make sure she is dry and the adhesive sticks a little better.. but we will be trying the “feathering” idea for sure! I just want to thank everyone who is sharing because, this is not an easy task! Having the support of other parents who are going through the same things and sharing there tips is just amazing! I love the support system here! 🙂

  8. Emily- Caleb has imperforate anus as part if VACTERL. With the leaking, Dial soap is key for sticking the wafer as is the feathering & heat. It will get better as you figure out what products work best for her skin. Are you on the Yahoo IA support group? They’re great. Also several on Facebook. If you ever need to chat, please know you can contact me. Congrats on your sweet baby!

  9. My son was born April 9th and also was born with an inperforate anus. I have to change his bag every day.. if I’m lucky every other day. He has a mucus fistula and a stoma that are very close to each other. The doctor told me it is okay to bag them in the same bag, so that’s what I’ve been doing?… It would almost be impossible to bag them separately. 🙁 This info is very helpful and makes me feel better to know that I am not alone!! I really would like more info on cutting a pad and how you attached it to help the leaking, though! Thank all of you so much!! 🙂

    • Forgive me for such a late reply! Congrats on your baby! If you’re still having issues, please us know. Hoping all is well and that the subsequent surgeries have gone wonderfully.

  10. Bill Allison says:

    My daughter was born with an impervorated anus and we have had a heck of a time finding help outside of Sick Kids in Toronto. However we have asked a lot of questions and read this blog and it has helped a lot. We had an ET nurse have us put her in the tub to take her bag off and she loves it, just sits there while dad talks and washes her with water and ivory soap. Only ivory! Mom prepares the bag and we sit in our rocking chair and dry the area as much as possible. We use hollister stoma powder and a spray called cavillon to help create an area that is clean and dry and helps to heal the skin around her stoma. We are getting about a day and a half out of each bag. This has improved since she first came home a month ago when we were changing the bag 3 plus times a day. Blogs like this are great as we have learn that there are not a lot of trained pediatric ET nurses outside of Toronto.

    • Congrats Bill! Love Cavillon- we used the wipes just for portability in the diaper bag kits. Not sure if you’re on Facebook but there’s several Imperforate Anus support groups and folks from all over the world are on them. It helps to connect with some local support and exchange info on local experts, how to work that healthcare system, etc. Thanks for sharing your tips!

  11. Thanks for posting Bea. This will be very useful to parents dealing with a child’s ostomy. The only variation I’d suggest would be to clean the wafer site with just water and a rough wash-cloth. My ostomy nurse mentioned that soap residue can cause the wafer to adhere less well.

    I’m extremely glad that Cal got his reversed at 9 months. It would’ve been terrible if he had to go through life with one. I’m a 26-yr-old man who’s had one for 18 months and even as an adult its hell. At least I had 20 yrs to live normally. A baby who gets a permanent colostomy never has a single day to live like a person. Its great that your son doesn’t have to go through that.

    • Thanks Johnny! Our ostomy nurse said Dial was the only soap that didn’t leave a film. It’s what we prepped him with before surgery too. Most of the time we would just use water though. We’re lucky that Caleb responded well to his surgeries. Many IA kids live with colostomies because they have serious complications with their reversal and colostomies become necessary. Thanks for sharing your tips. Calipers! Brilliant!

  12. To Lacy:
    If the stomas are done healing/shrinking, you can measure the diameter very precisely. I used a caliper and a compass on mine. Then cut a circle that leaves a 0.125″ gap around the stomas. This provides enough room for the stomach to expand/contract without cutting into the stomas, without exposing too much skin to irritation.

  13. Hi there, thank you for posting these tips. We’ve been home from the hospital for two days with our 12 day old newborn & his colostomy bag changes are breaking our heart & irritating his skin so bad. We’ve made 6 changes in 2 days & we were using paste & having to take it all back off only to aggrevate the area more. We are also trying to work around his belly button so it will heal. None of it is as easy as it was at the NICU which is 5 hrs away from us. Our NICU doesn’t really see cases with bags. Our son was born with Imp Anus too with VATER/VACTERL. After this whirlwind that has changed our life, I am now searching the web for tips & support groups to hep understand all of this in ‘real life’ terms not NICU/DR terms. I found this blog to be helpful & would like to ask for recommended VACTERL support groups too. Thank you.

  14. Congrats on your son! Facebook is the easiest way to access the support groups. For VACTERL check out VACTERL Association, VACTERL Network or VACTERL Association support group. There is also a VACTERL Network on the Internet. I liked the rings better than the paste. They came off easier too. The rings were so big on a newborn’s tiny little stoma. I would cut them in half, then bring the ends together making a smaller “O” shape. Are you using a skin protectant wipe? That helps with that delicate baby skin. If you go to my “about” section on this blog post, there’s a link to Caleb’s caringbridge blog. I think you’ll relate to many of the posts. Trying to think of how to connect with you.

  15. My daughter was born with a imperforated anus, along with her intestines and bladder out of her body. She is now 10 months old with her bladder still out so im sure you can guess how important it is to us to get a bag to stay on, not leak along with keeping her skin healthy in that area. This has been very challenging but it is getting easier. We have found that just cleaning the area with warm water works the best for us. We also found that if you use a skin prep product or no sting barrier (we use Cavilon) this can also be used to remove the bag, works wonders. My daughter doesn’t even feel it so there is no discomfort allowing for an easier bag change. In the beginning we also had a hard time keeping a bag on her 2 lb 8 oz body but we found that if we apply the no sting barrier, then the stoma powder lightly (use a nose bulb to blow the powder on lightly) then we would apply the no sting barrier again before putting on the wafer or Duoderm. After getting the duoderm on I also put the no sting barrier on the duoderm before putting on the bag. The no sting barrier helps it to stick. Right now we get two or three days from one bag. Although if there is any question in my mind that it may leak I will go ahead and change it. Hopefully we will be traveling soon for the reversal of the ostomy along with them putting her bladder back in her body. Praying this goes well :o) any advise from anyone who has went through this would be greatly appreciate.

  16. Always open up the colostomy bag just after changing..a little air in the bag allows the poo to fall down the bag rather than be squashed and forced through cracks allowing leakage…practice is perfection

  17. My son has imperforate anus also and we just got him home after two weeks in the hospital. It’s just been a hell of a time keeping his colostomy bag on which we have had to change twice today and he just came home yesterday and this is so difficult for us, however with the tips on this website it has been so much help already thank you all. We pray for all of you and ask that you pray for our son Kyle thank you again.

  18. Katina & Steven- congrats on your respective babies! Always a blessing even when it’s a little more work.

    For additional support I would look on Facebook where there are closed groups (meaning your friends can’t see these private posts) for both conditions, IA & OEIS (I’m guessing). I have found them to be helpful in emotional support as this is a rare experience to have a child with IA plus lots of practical advice too. For IA I also recommend the IA Yahoo group & the Pull thru network (on FB too).

    Caleb is now 2 & the path has been challenging but he’s wonderful! That first year is so hard with a new baby & so much new information. It’s survival mode getting from surgery to surgery. Don’t forget to enjoy them, soak them in because they’ll be in their terrible twos soon enough!

    Prayers for you both & your families.

    Thanks roanaid- that is a true tip! I forgot that one!

  19. I’m so glad I found this page. A month ago I found out that my baby boy (Caleb) who is due June 17th has anal atresia and it looks as though he also has a fistulae as well as a tethered spinal cord. I’ve been trying not to stress and to prep myself for what’s to come. I also have an almost 3 year old daughter so I know my hands will be full. Thank you so much for posting this information.

  20. I wish I found this sooner! My son, also Caleb, was born Dec 2013 and was in the NICU for 2 weeks was born with an imperforated anus. I changed his bag fine in the hospital and it lasted 3 days but when we got home (the day before Christmas Eve!) I changed it 6 times in 4 days!!! I was a mess bc I couldn’t figure out what I was doing wrong. Eventually I got it down and can now change his bag alone and it lasts 1-2 days… He is a kicker!! I use Burt’s bees fragrance free shampoo (I lather up a tiny amount) on a damp warm wash cloth to wipe around the stoma and once dry I wipe with THREE (can’t be too careful) non-alcohol skin barrier preps to make sure I got off any adhesive residue as well as any leftover shampoo on his skin. I have a template that I made by measuring it to his stoma has gotten smaller every few weeks so when it changes size I notice he leaks more. I read a lot about putting cotton balls in the bag and was nervous about doing it. I think I am going to try that for his bedtime since he now sleeps 10 hours through the night. I never knew about letting some air in the bag once replaced so I will definitely try that now (thanks)! His next surgery is coming up in May to connect his rectum to his anus and create an opening for his anus. Then once that’s healed they said 4-8 weeks after they will close up the ostomy. Hoping all goes well with that. He’s such a happy baby. You wouldn’t know there was a bag of poo under his clothes. 🙂

    Anyways… My question to you is about tummy time! I don’t do it as often as I should and I hope it doesn’t interfere with his growth as far as crawling etc. Did you do it often with your son? I just get nervous with the stoma being pushed back into his body since they say not to put anything tight over the stoma. I don’t know if that’s even possible but it is a worry of mine. I do put him on the boppy for his tummy time and he slides back down from kicking and fussing or just gives up and falls asleep. Should I be scared about doing it more?

  21. April Kaufmann says:

    This is the first page I’ve came upon that has made me feel like im not alone in being terrified about all of this. My son was born January 2 with an imperforated anus, a single kidney with a cyst in it an a tethered cord. We knew our son had one kidney but the rest came when I gave birth to him. The first time we brought him home with his colostomy bag my husband worked a graveyard an I had to change the bag without him an he was the only one who knew besides me how to change it. It was horrible my son cried a cry that broke my heart in a million pieces but like everyone else with trial an error we have finally got it down except now he moves more an the bag sticks less soooo thats been trying 🙂 but im so glad you posted your experience Bea this is helpful and I will be trying them! Thank you!

  22. Kay Haslem says:

    My daughter was born on December 23rd with an imperforate anus. She has a fistula as well. I just want to encourage everyone that is struggling with changing the colostomy bag. It will get better. The nurses in the NICU didn’t even want to let me go home because I couldn’t fathom how my child had been born. My husband ended up learning. Fast forward three months and he’s living in Japan. Its me the baby and her colostomy. I’ve found the blow dryer to be my best friend. Dry the skin, apply barrier wipe, apply paste around stoma, warm wafer, apply it, attach bag,cover mucous fistula with 2×2″ gauze with paper tape. Ive been in situations where it leaks and I simply wash the area,apply desitin, a 4×4″ gauze ans place a diaper on sideways as well as her regular diaper. With this way you have to change it more frequently but if in a time crunch it’ll work as well. She has had her fluoroscopy procedure done so her surgery will be soon. Praying for a 100% recovery. I don’t know what I’m going to do if I have to change a poppy diaper. Sorry So lengthy. Colostomy mommas unite!

  23. Laura, Dina, April, Kay- welcome to the IA club! A great sorority of moms with special kiddos. And how funny some are named Caleb too?

    Caleb is almost 3. He’s doing great! We’ve had new diagnoses (not common so no worries) but y’all- he really is doing great. That first year is the hardest. Hang in there, get through the surgeries, and don’t forget to enjoy your sweet babies too as soon they’ll be toddlers. Prayers and good health sent your way!

  24. Hey everyone,
    I can’t thank the inventor of internet enough. I live in India, and lask Monday, my baby boy was born 34 weeks with IA. We knew about hemibertevra in upper lumber region, but we’re totally taken off guard with this. We are a close knit family and lots of cousins and friends and no one has ever faced this. Thankfully my cousin is a very senior Neonatologist in India and so, he has been able to support me mentally.
    I know now that this is a fairly common condition.
    Reading thru all this, I’m very nervous about what’s to come.
    My son was operated on day 2 and today is day 5 of his life. Tomm I’ll be shown how to take care of the stoma and bag and whatever…
    Thanks to all of you, I am prepared with my basic knowledge. The issue here is most of the brands might that all of you have recommended might not be available. So, I guess I’ll just ask my sis ( who lives in New York) to overnight till I try and choose the local brand.
    Thanks to all of you again.
    Can someone help me connect with the closed Facebook groups ?
    🙂

  25. Shabnam,
    Congratulations on your new baby! Despite the IA and the fear, it is a wonderful blessing to have a child.

    If your cousin is going to order medical supplies, try Edgepark as they give a big discount if paying out of pocket (using no insurance). Also shop around- many put unused supplies up for sale.

    On Facebook, just send a request to the closed groups. The admin will then accept you. Some to try are: Imperforate Anus International Support Group, IA Kids. They have more international participants. Also like the Alberto Pena MD Colorectal Center (run by Cincinnati Children’s).

    On Yahoo Groups there is an Imperforate Anus support group too that does have members in India.

    Best of luck! Many blessings your way.

    Bea

  26. Hi Shabnam- I can send some samples to your sister if you like. I have a two yr old son which still has colostomy bag so I have extra supplies. He was also born with IA and had encountered some uncommon issues that has prolonged his reversal but he’s a happy little guy. Congrats on your baby and know things get easier. Just try to enjoy your baby. -regards Rebecca

  27. thanks a lot for your kind and encouraging words Bea and Rebecca.
    my son is a preemie also, and so, its really diff to stick the bag on his tiny tummy right now. a few companies have presence in India and i think tht when the time comes, i’ll see what needs to be done at that time only.
    at the moment, i’m just cleaning the stoma and stool every 2-3 hours and kind off using a lot of sterlized covering, which is turn is kept in place by an oversized diaper. Its summer time here and is really really hot. so, i can get away with just putting a vest, mittens and booties on him and over that, i swaddle twice.
    once he becomes bigger, then i plan to use bags.
    thanks again, will keep all of you posted.
    🙂

  28. Hi! Iam a mother of 3mos old baby with IA. My husband and I had a smooth journey until suddenly we had to change his wafer almost everyday due to leakage because of his mucus. What advice can you give us about leakage and also his skin is kinda red already,is skin prep really good? What brand is the best.

    Thanks! God bless us all parents!

  29. Hello again, I posted here last Sep when my son (IA/VATER) was home 2days from NICU & we were having a terrible time w/his bags sticking. We finally got a method that worked for us w/ these tips. He had his pull through in Dec (wk b4 Christmas) & is colostomy reversal in March. He will be 1 nxt mth & is doing awesome! We had a terrible time w/diaper rash but now he is eating more food & not just breast milk his stool is like reg baby poop…hooray. Funny to celebrate poopy diapers, but IA families understand 🙂
    I have a question for Laura if she sees this…how did you know pre-delivery of your baby’s issues? What test gave you those answers? Just curious. My son had IA, a horshoe kidney w/hydronephrosis, extra vertebra & an extra rib on each side. I went above the norm w/ DNA testing & such to be informed if my baby would have issues. I did everything except an amnio & they never told me anything but normal. We found out the IA the morning after & the other over the next couple of days. We were told those were issues that could not be determined until after birth. Not that it changes anything, but concerned now we were given the wrong information.

  30. Hey Kim,
    Heartiest congratulations on successful completion of the whole process. I hv just started out and hv a long way to go.
    I don’t know if my experience will help u, but here it is… We were told of hemivertebra in upper lumbar region in the ultrasound scan before 2 nd level scan itself.
    The condition persisted as same and didn’t get worse. At the same time, we were clearly advised tht all congenial anomalies cannot be detected in ultrasound.
    Got to know about IA and flat bottom upon delivery itself.
    Now, the thing is, tht we were assured during the scans tht the ribs and other skeletal structure was fine. Going by this logic, u probably should have been told about the ribs atleast if not more.
    🙂
    Shabnam

  31. Hello everyone. my baby girl just turned one. She was born with IA. Unfortunately we noticed later on because of the fact her poop was coming out of the wrong hole. How no one noticed Have NO clue. Including myself. She just had her surgery June 2. We are just struggling with the bags staying on. Some time we get a full day. Others it’s 4 or 5 bag changes. She has a colostomy and a mucus fistula. Just ordered barrier strips yesterday. I hope it helps. Anyone have any tricks? It would really help. Thank you 🙂

  32. Dear Kim,
    I was just at the PTN Conference with Dr. Levitt and he stated that the only IA condition that should not be missed on ultrasound is cloaca (the most severe form of IA for girls) and exstrophy (where the organs are outside of the body). He did say that sometimes they can tell bone abnormalities, kidney abnormalities, and a dilated colon indicating (or giving high suspicion to IA). It all depends on the level of the ultrasound, quality of the images, experience of the technician capturing them, and cooperation of the baby. If there is any suspicion, the mom should be sent to a center familiar with that condition to their maternal-fetal medicine for a higher evaluation. For example, at Cincinnati, they are experienced and sometimes do a MRI to confirm their suspicion. Sometimes the moms choose to deliver there just in case as the NICU team and colorectal surgeons are right there. I hope that is a little helpful. I had no idea and had level 2 ultrasounds as well each month, then each week because my son had a two vessel cord. By far, our experience is more common of not knowing beforehand.

    Dear Sara,
    Oh my goodness. I’ve heard of babies being caught with IA days late, but a year later…wow. A colostomy on a one year old is much more challenging as they are much more mobile and less cooperative. If you can have your surgeon refer you to a would care nurse, find ostomy support group, or parents who have children with Hirschsprung’s Disease as they commonly have ostomy bags through 1-2 years of age. Otherwise, trying to find the pattern on the days they don’t stick plus a lot of trial and error in trying new things. Read through the comments as folks shared their tips too. Best of luck.

  33. Thank you Laura & Bea. Now that we are through everything, I am really concerned that some of us mother’s who wanted to be as informed as possible & doing the level 2 ultrasounds are suprised at birth. We were lucky I wanted to breastfeed & my son didn’t get a good feeding because his wasn’t caught til the nxt morning & then it was a four hr ambulance ride to a better hosp. My main concern has been his care, but now I think of other mothers going through what we went through & I just wish I had been more informed.
    We just completed his circumscion & repair small hypospadeois yesterday. His 5th time under anesthesia in 11 mths & he is up playing today. These babies are super heros!!! I think we are all done w/ everything now ~ as long as his vertebral abnormalities don’t cause problems in his puberty yrs.
    My BEST tip on bag changes (we got 3days a bag typically) is to use boogy saline wipes around stoma & use the roll top pouches. I folded 2 sets of double cotton squares & put n the clean bag. I would use long tweezers to pull out absorbed cotton & replace new cotton. This kept the bag from getting heavy & having pull. Our surgeon that it was a great idea & shared w/ other parents. I got the idea from an ostomy parent who was also a nurse. God Bless to all.

  34. Kim-
    LOL. We used tampons for that same reason!

    Regarding the hypospadias, Dr. Alam, who is a pedi urologist experienced in the care of kids with anorectal malformations, presented at the conference that hypospadias in IA can be more complex. He stated that even the experts in hypospadias, which there seems to be a clear protocol and lots of experience in the care/repair, agree that it is a little different in IA. Dr. Alam’s email is sa3168@cumc.colombia.edu. Please know that I do not intend to alarm or worry you- I want you to have the newest information out there and perhaps he can share with that with you so you are aware. It was the first I knew of it, but my son did not have hypospadias and it was also my first conference so the first time listening to these in-depth lectures on IA and associated conditions. The more we all collectively know and work together, the more we can progress and improve the care for all kids with IA.

  35. Bea, thank you very much. We met w/ a few diff DRs & everybody had diff stuff to say so YES, I will definately contact him for more info. We decided to move forward w/ the most tenured/experienced DR PED Uroligist we met with ~ mostly to get this behind us/him before he got much older. With the conflicting info though, I’ve been apprehensive…even after the surgery yestrday. I am no DR or med profession but it makes complete sense there could/would be a connecton. I am now very interested in learning all I can regarding these issues & really wish we could find some common core of these VATER abnomolites (excluding hypo which is a 1 in 250 more commom issue). Where was that conference & how often are they held? Thank so much!

  36. Kim-
    It was the PTN (pull thru network) conference. They are online & on Facebook. The conference is every other year. It offers parent support, sibling support, affected child/adult support along with lectures on colorectal conditions (IA, Hirschsprungs) and associated conditions, school accommodations, etc.
    Next year will be the VACTERL conference put on by the VACTERL network. Regarding VACTERL, Dr. Ben Solomon is probably the most published on the various conditions frequently seen among VACTERL kids.

  37. Bea,

    Very helpful information about the feathering technique. It really works great when trying to conform better to little body shapes or when there is a hernia.

    Also, some of the ostomy supply companies carry smaller sized output bags that may used by some babies and are a great option for short periods of time. As you mentioned some of the ostomy supply companies will send you free samples. Just ask for these tiny bags to try out to see if they will work for your baby.

    For the ‘squirm proofing’ and the ‘little hands pulling’ …the Stealthbelt ostomy support holds the ostomy bag to the body so the baby can’t pull on it. It keeps the ostomy pouch completely enclosed out of sight. Thank you for the tips. This is really so much help for a lot of people.

  38. Hi Bea,
    I cannot thank you enough for all the great information here. I am a physician but knew nothing about putting on a colostomy bag until my daughter who has Down Syndrome was diagnosed with IA last month. She now has a colostomy and we are waiting for her pull through. Earlier, you mentioned bags with filters so I obtained samples from Hollister and Convatec that are drainable but they are way to large for her. There is a nondrainable pouch with filter by Convatec that is smaller but despite the filter it was full of air by the end of the day. I was hoping to get at least 2 days with it but it appears I would have to change it daily given the air. The nice thing about the 2 piece system is I’m just removing the bag and popping on another to the same wafer, so I may end up sticking with it if my insurance will cover 3 boxes per month. Did you find any particular brand of bag to be most convenient when Caleb was <3 months old?

  39. Theo Lian Pianga says:

    Hi,
    my baby girl was born on 15 January 2015 and has gone t colostomy on the next day. she is 1 month old and weight 2.5kg. The doctors said she’s diagnosed with hirschprungs diseases. when can she have a reverse colostomy?
    Looking forward a respond from you.

    • Hi Theo! Congratulations! Imperforate anus and Hirschsprung’s have the same surgery, but the timing is different depending on the type of Hirschsprung’s she has, if she develops complications, etc. I’ve met several families with Hirschsprung’s that have had the PSARP surgery anywhere from 1-3 years old. My best recommendation is to read more and email an expert surgeon (I personally recommend either Cincinnati Children’s or Nationwide Children’s as the leading pediatruc colorectal surgeons are there, who have the most experience with HD, you’ll find them to be very nice and responsive even if you aren’t their patient!)
      More info: http://www.cincinnatichildrens.org/health/h/hirschsprung/
      Dr. Frischer, Cincinnati Children’s: jason.frischer@cchmc.org
      Dr. Levitt, Nationwide Children’s: Marc.Levitt@NationwideChildrens.org

      Also on Facebook, check out the various HD groups. Those parents will have a wealth of information and provide great support. Someone who understands the journey. Best of luck and best wishes for good health!

    • If you’re interested in reading/listening to Dr. Levitt speak about Hirschsprung’s, there is this link to his audio cast along with full transcript.
      http://www.pediacast.org/hirschsprung-disease-pediacast-287/

  40. Rachelle says:

    Thank you so much for all of your wonderful ideas. Our son was a 30 weeker and after two months of not eating they finally found he had not only a band around part of his intestine but also webbing in another part. He was in the nicu for three months and just ame home. We seem to be changing the bag every day and he’s been very fussy latley so I’m hoping to try these new things and help him feel a little more comfortable for the next couple of months until they reverse it. It makes me feel like I’m not such a bad parent knowing other family’s sometimes have a hard time and I’m not the only one. I will for sure keep checking back to see if there are any new replys with more good ideas. By the way , the keeping it in your bra is a very clever idea. Thank you so much everyone for all your help.

  41. Thank you for this article! It helped tremendously during my son’s NICU stay. I did all his ostomy care and it was so much easier after reading your article.

  42. Heidi King says:

    Thank you for this post. My son was born with IA, E/T fistula, a tethered cord, and heart issues…none of which were seen on ultrasounds. He arrived at 36.5 weeks and spent 28 days in NICU. We are home now and trying to deal with a double barrel colostomy and I worry that I will just never get the hang of it to keep it stick on properly. We have changed it 4-5 times in the first 36 hours that we have been home. I cry everytime so I am glad to know there is hope. I just hate the thought of his poor little skin being so irritated. We just have to make it for 6-12 months before he will have his IA repaired and the ostomy reversed. Your advice and candid attitude have helped ease my worries in the wee hours of this morning.

    • Hi Heidi! Congrats! It is so hard and takes you completely off guard. Caleb has VACTERL too. Have you joined the VACTERL, Imperforate Anus, or EA/TEF groups on Facebook? So helpful to connect with mamas who get what you’re going through. You’d be surprised- there may be someone even close to you! I’m on several of the groups too. They are so supportive and totally get those moments of grief, panic, anger, etc. that you go through as a mom to a rare, special little human. Wishing you both the very best!

  43. Bea, even my son is born with imperforate anus, and has very low birth wieght, doctor has performed a colostomy, but i am advised not to use colostomy bags, and to keeo the colostomy open whenever possible, please tell me how long is it okay to keeo the colostomy covered in a diaper, i am feeling very low for having a abnormal kid, who doest have an anus, please give me tips on this, what if he roll backs on his stomach after 3 months, what will happen to the colostomy please tell me each and every thing…. Thanks

    • Hi Taniya!
      Congrats! We used colostomy bags all day every day but another alternative is to double diaper- where you put a diaper sideways around their waist with the absorbent area by the ostomy site and then a larger diaper on regularly. There is no issue doing either. Look at Cincinnati Children’s or Nationwide Children’s website about imperforate anus. World leaders in imperforate anus and very good online information. If you’re on Facebook, check out Imperforate Anus USA and International groups. Very helpful and supportive! You are not alone!

  44. Hamari Jamatia says:

    Hi all, my 9 months old DD was born with IA and has a colostomy bag on from day 2 after delivery. I use a different technique and is quite happy as the bag stays on for 3-4 days. My main concern is that recently the skin around stoma looks irritated and red. How do I take care of it? I feel very concerned using eakin over the irritated skin. Please help.

    • Hi Jamatia! That is tough. When that happened to my son, we would air out the skin by either wrapping a cloth diaper around him or laying him on an old towel and dabbing the poo off as it came out. If you do the cloth diaper, we would put a small amount of Vaseline over the red part of the stoma to help keep it moist and from bleeding as it is very sensitive. Usually, with a few hours, it would clear up. You can use over the counter and prescription cream on the skin, but it makes the bag less adhesive. With a dry rash, you want to moisturize. With a weepy rash, you want to dry.

      One thing to note is if you notice little dots where the skin is red, it may be a yeast overgrowth. I would go to your pediatrician or wound care nurse so they can see if it is as that needs a different type of medicated skin cream.

  45. Hi! Thanks so much for this post, I found it shortly after my daughter was born in October. She was born with an IA and has had a colostomy bag since day 2. The tips you mentioned were very helpful. We are actually at the end of our road with the bag – she has her reversal next Friday. Today we noticed some blood in her mucous discharge. I have left a message for the doctor, but haven’t heard back. The blood was streaked and red. I looked for a source, but couldn’t find one. We switched to a larger gauge rod last week, but it doesn’t seem to bother her anymore. I know the dr. had said when you move up a gauge you may get a little blood, but we’re over a week out. Could it still be from this – or a bigger issue.

    • Glad you called the doctor. Sometimes it takes awhile for mucus in the mucus fistula to work it’s way out (would look maroon/darker blood) and other seemingly harmless things can cause irritation too (usually is bright red blood). Photograph it so you have a visual record of what it looked like. The mucus fistula is intestine, which very easily bleeds because it has such a rich blood supply. It is less worrisome if it is scant (very little blood) and has no other accompanying symptoms like pain, fever, redness, swelling, pus, etc. Hoping it is nothing serious.

      Best of luck with the colostomy closure! Now onto the bowel management adventure!

  46. I am so glad I found this site today & should have looked sooner. I have a 5 month old boy who was born with VACTERL. He has an imperforate anus with fistula between his urethra & colon, hypospadius, extra vertebrae, a testicle that has no descended on it’s own & two small holes in his heart. We are watching for a tethered cord by MRI too. I had a two vessel umbilical cord & placenta previa. I feel the two vessel cord contributed to his condition & the placenta previa caused an emergency c-section at 33 weeks. We had no idea he had problems until he was born despite having ultrasounds throughout the pregnancy & DNA testing. I am 38 & my husband is 42…I feel our ages caused the 2 vessel cord but we will never know for sure. I have a healthy 5 year old boy & healthy 3 year old girl.

    Changing out & draining the colostomy bags has been quite a challenge and a learning experience. The samples from ConvaTec & Hollister have been very helpful in finding what works best. Trial and error for sure. I really like the bags with filters for the gas but the bag that works best for him right now as far as sticking & leaking less does not have a filter. The one that does ends up leaking in less than a day. I’ll usually get about a day & a half to 2 days lately & empty them about every 3 hours into his pee diaper when changing him. I clean the skin with a ConvaTec brand adhesive remover wipe which works the best out of all I have tried then use a sting free skin prep barrier wipe before placing the bag. I do warm up the wafer in my waist band or bra as mentioned on this site. I also pre-cut & put together several bags at once so they are always ready & have decreased the time it takes by so much since we brought him home by being organized and having lots of practice. We are told 9-12 months to start reversal process & I am still waiting to hear about when his urology surgeries will be to circumcise, bring down the testicle & repair hypospadius. I assumed that would happen first but the next Urology follow up is when he is 10 months old.

    Any help and advice would be much appreciated! I am really worried about how the outcome will be once it’s time for potty training. How well he will be able to distinguish between liquid, solids or gas. I would be heartbroken to have him go through all the surgeries only to return to a colostomy for life.

    • Get thee on FB! Lots of moms have been in your shoes. Imperforate Anus USA, Pull Thru Network, VACTERL Association to start off. All will message you first before adding you, just due to the nature of the subjects discussed. Check your other inbox. We didn’t have those Uro issues but I know many have and can give you advice. Loads of potty training advice too but for now, eye on the next big hurdle. So hard not to worry about the future but you’re in good company and you WILL get there! Just focus on the next big hurdle and enjoy that sweet baby. My son was a baby when I wrote this and now he’s 5. The first year is the hardest, hands down.

  47. Virimayi Moyana says:

    Hi my wife give birth at parklane hospital on the 17 of september to my son with a colostomy.lt was very defficult for me to believe because it was my first time in my life. But with the will of God my wife and l takecare of the boy learn ourslve how to change the bags up to the 3month which is now he is ready for the operation to use a normal stool but my wife she got a lot of experience that she can help those still have the same situation

    • Congratulations on the birth of your son! You both may want to join one of the many FaceBook imperforate anus groups, the Yahoo IA support group, or the Pull Thru Network. It is always great to have experienced parents helping each other out by giving tips, advice, etc. I hope his surgery goes wonderfully.

  48. Virimayi Moyana says:

    Life need family to be strong when comes to the situation like this

  49. Kimbra Power says:

    Thank you so much for this post.
    As a foster mum of a ten month old chinese baby born without an anus, who has recently had surgery, and now has an ostomy bag, I’ve been on a steep learning curve; this page was the most useful one I’ve read so far, thank you.
    Kimbra

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