After the anal botox procedure for our son Milo’s Hirschsprung’s disease, he had an atypical reaction and it caused 6 weeks of the worst rash breakdown you can think of. It was horrifying – trips to the ER, wound care specialists, and nervous system collapse for myself. There was nothing to stop the onslaught of stool that was constantly exiting his body so the skin around his anus had the equivalent to a second degree chemical burn from how acidic stool is. It was a very traumatic time for our family and I still worry about the trauma Milo endured from it.

I would scoff at anyone calling it diaper rash, because this was so, so much more than just diaper rash. I wouldn’t wish this type of experience on ANYONE. It was a 3 steps forward, 2 steps back type of thing, it would begin to heal up just a little, then the next day it would be worse. The drying techniques used below helped the most with breakdown but we had to wait for the botox to begin to wear off some so we could have a day or so of healing to get it under control. I so wish I knew all of this information while we were going through it, so if these tips help even one family going through the dreaded Hirschsprung’s skin breakdown or rash, I’ll be happy!

Let’s start with redness and irritation. The Remedy Zinc Oxide is a great diaper cream for healing irritation as well as every day use. Calmoseptine is a bit stronger for heavier irritation without skin breakage.

All of these products can be found on amazon except the ones I’ve noted. Before having this procedure or before leaving the hospital, I would see how many of these things you can get from the hospital. I’ve provided amazon links where I can. These aren’t affiliate links, just making it easy for you. 🙂

Remedy protect zinc oxide paste: https://a.co/d/hluEK7e

Calmoseptine: https://a.co/d/9Ui3hN5

Gauze pads: https://a.co/d/eKEgLML

Corona ointment (read the reviews!) https://a.co/d/eCXmew4

Cavilon no sting spray: https://a.co/d/2RbNyvv

Once there is any type of skin breakdown, drying it out is of upmost importance. Use stoma powder or corn starch first, then Cavilon no sting barrier spray, let it dry, then corn starch or stoma powder, and spray again – let it dry (10-15 seconds). Then add a very soft piece of gauze (like pictured above with the calmoseptine) or t-shirt, or even viva paper towels cut into small pieces to help soak up any weeping. (The corona multi-purpose ointment pictured is actually for horses but can be used on humans. It is very thick and helps with healing.)

Another skin protectant product I came across recently that is supposed to be more heavy duty than the barrier spray is cyanoacrylate skin barrier film, https://www.medline.com/skin-health/marathon/. We haven’t tried it but it may be worth a shot.

You may have heard of the crusting method as well when the rash gets to breakdown territory…we didn’t find the crusting an option for Milo because his stooling was just so frequent. No matter how many powder/film layers we put on, then a thick layer of cream, there was still stool on his skin so we had to remove it all every time, it never crusted and stayed dry against his wounds. We went through so much product trying this.

The idea is there, so maybe it will work for you – here’s the steps: “The procedure for crusting is to sprinkle stoma powder on denuded areas and then seal it by applying a skin barrier film. This film dries in 10 seconds or so, and then another layer of powder and skin barrier film should be applied, creating a very durable layer of protection to promote healing and prevent further breakdown. Zinc-based barrier cream should then be applied over the layer of “crust.” With diaper changes, the soiled layer of barrier products should be skimmed off gently, and then more cream should be applied.” https://www.woundsource.com/blog/do-you-know-basics-incontinence-associated-dermatitis-treatment-and-prevention

Once there is any sign of a rash, only wipe with vaseline. Breakdown will require a saline wound wash (Dollar General or amazon) or in the tub and spraying off with a wand. If you are spending a LOT of time in the tub like we did, it’s hard to keep any type of cream or drying techniques in place so I found that the Cavilon durable barrier cream (https://a.co/d/aqu28Xb) is fairly waterproof for extended tub time. There were a few days that for hours on end, every 20 minutes or so he would have a small amount of stool but enough to have to change his diaper and reapply treatment. So that’s why we stayed in or near the tub pretty often!

With a persistent rash, you need to consider using an antifungal cream so the risk of infection of the wounds is limited. Mupirocin and Nystatin can be prescribed by your pediatrician or doctor. And you can mix it in with your regular diaper cream – or use the recipe listed at the bottom of this post. Use these for yeast rashes as well. Yeast rashes appear as a bright red rash with defined borders, often accompanied by blisters. Antifungal powder: https://a.co/d/aDkAtcW

We applied the xeroform medicated gauze strips at night once he was asleep and we got these from the hospital. The skin repair and wound honey were two options we used intermittently or whenever we could to promote healing of the skin.

This recipe was shared in HD group on Facebook: Mix 4 oz. desitin, 2 oz. A&D, 1 oz. tube of neosporin, 1 oz. tube of anti-fungal cream, 20 mL of liquid antacid and thicken with stoma powder. Dust with powder at every diaper change.

This is a great option to try with the crusting method or just as soon as you see any redness or irritation to prevent breakdown. Sometimes no matter how hard you try, skin breakdown will occur because it’s such a sensitive place on your body, stool is constant, and obviously not easy to dry out in open air. Especially if your little one is in diapers.

If your child is experiencing the HD skin breakdown, know that this too shall pass, you’re not alone, and you will ALL get through this! I hope these tips help. Reach out to me if you have any questions.

We now use the enemas as well as the Navina Smart Irrigation system to keep him regular. He is doing well! We’re so thankful for that! 🙂

WARNING: GRAPHIC IMAGES BELOW. Scroll down further for a few pictures for reference.

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This was the day after the botox treatment. At the first sign of redness and irritation, start applying cream at all times.

This was a few weeks in with skin breakdown. The picture shows the failed crusting method. It would stick to the skin but not the wounds.

This was as bad as it got :(. We were using the barrier spray, corn starch and gauze to help dry everything out.