Suggestions on Daughter Who Has Hirschsprungs Disease Now Has Chronic Diarrhea

Updated on December 07, 2010
W.J. asks from Shepherdsville, KY
19 answers

My 3 y/o daughter has hirschsprungs disease. She had corrective surgery. She now can have bowel movements but it is always diarrhea. It has been 2 years since surgery and still she goes about 6-10 times a day. The diarrhea causes her bottom to severely break out with painful open sores. She has been to so many doctors and tried many creams and medicines to keep her from breaking out and nothing seems to work. She recently had food allergy testing which showed that she is allergic to yeast and dairy. I have taken her off all of that and it has almost been a month and no change. If any one has suggestions of what could possibly be the problem or a new cream or medicine we could try I would appreciate it. I really would love nothing more than to figure this out so she can feel better and be able to go to school. Thanks so much!!!

PS I forgot to post that she was tested for Celiac disease about 4 months ago and it was negative. Thanks :)

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V.K.

answers from Nashville on

my nephew has hirschsprungs too and is about the same age. He just recently was referred to a hospital in Cincinniti they have a ped. colon center there and I think just about every hirschsprungs kid gets sent there for any extra problems. He has the exact opposite problem right now and can't "go" Maybe they could help. Do you want me to try to get a name for you? Good luck! I know that this disease is challenge. I am glad she doen't have Celiac's :)-V.

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L.V.

answers from Greensboro on

I am not familiar with the disease, but my child did have severe diarrhea when he was small. My ped recom. Flander's buttocks cream, you can get it at Kerr Drug. It cleared it up w/in a couple of days and it was an instant cry stopper. Hope it works for you.

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K.K.

answers from Huntington on

ok this might souds strange but my son had a bad stomache virus and was going about 10 times a day and his butt was so raw that i felt horriable try reg creamy desitin overnight it truly helped aver night put it on thick and everytime if that doesnt work ask your dr about Zab oinment you have to get a rx for it but it seems to work really good too

1 mom found this helpful
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W.M.

answers from Louisville on

Hi W..

Unfortunately, i don't know much about her disease :-(
But I can suggest giving her pure unsweetened pumpkin a few times a day to keep her regular. It will remedy loose stools and constipation.
Also, have you tried a gluten free diet. You could continue with no dairy, but try to incorporate the gluten free diet to see if that changes anything. Gluten and dies in food can cause a wealth of problems even if you don't have a disease.
My best to you and your family.

W. from Indiana

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A.C.

answers from Charlotte on

Chronic diarrhea can be a sign of Celiac Disease -- which is an intolerance to gluten which is found in wheat, barley and rye. Often children with other allergies have this disease and parents do not know it. Your daughter can be given a blood test by her family doctor, but you may have to beg for it -- doctors are not very in tune to this disease for some reason. You could also try eliminating all wheat and gluten from her diet for a week and see if there is any improvement. But if she does have Celiac, she will not be able to have a trace of gluten in her system or she will react to it. There are great websites out there where you can find more information. Just google "Celiac Disease chronic diarrhea" Best wishes and God's blessing to you and your daughter.

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C.A.

answers from Hickory on

It's just a suggestion, but try putting your cream of choice, and then put corn starch on top. It keeps the cream on longer and stops it from rubbing off so the cream can help heal her bottom, plus corn starch is a soothing agent. I hope something works for you. I have 2 little girls of my own, 10 and 4 and my 4 year old is allergic to milk, so we have had diarrhea problems also.

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T.S.

answers from Lexington on

I am going to suggest triple paste cream, however you may have tried it. It is pretty good stuff. I don't have any other suggestions though, I don't know the disease. I feel for your little one though. As parents we only want our kids to experience happy times, not painful ones. I will keep her in my prayers, as well as you.
Good luck....
Tashin

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P.M.

answers from Los Angeles on

hi my name is daniel and i know exactly what you mean cause i'm 16 and im almost in the same shoes as that not you but your daughter, when i was an infant i had two lots of surgery the first was Ostomy Surgery and then not two long after that i had another operation called a pull-throught procedure by the sounds of things thats probly what you daughter has had done im not sure how i could help but if you have any questions do ask and hopefully i can help shed some light on the subject, oh and the painful red open sores i sugest you use some zinc cream its ment to be like a realy thick sun screen thing it also helps with the burns which is what the red sores are burns from the acid in the poo that rest on the skin but if you wash the area dry it care fully to make sure the area is clear up remember its like acid on skin if its there it will start to burn the skin so the time the skin has acid on it the less time it will be buning and actualy start to heal.P.S please Email.me to let me know how it gose and if you have any questions just ask me my Email is [email protected]____.com i just hope i can help so please do ask away i mean theres know harm in asking is there

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R.E.

answers from Nashville on

I am not sure about the disease but I have just been to an all natural doctor who has help my IBS and overall wellness.
It is expensive but worth not taken percription meds.

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K.B.

answers from Fort Myers on

Did you find an answer, my 20 month Grandson had corrective surgery last March. The consistency of his diapers have been all over the place diarrhea, mush, tiny little stools a bit softer then a tootsie roll.
His doctor thinks the dilation process may help with his stools being bigger and maybe less often. He has some scar tissue that could be obstructing, we will try the dilation process first, and then he will remove the scar tissue, it if necessary. I am sure the dilations also cause irritation.
I think the Destine night, the purple tub is good, I talked with a nurse who works at that hospital in Cincinati, she said their Butt cream is Maalox and Aquaphor. I tried it but did not have a recipe. I think I made it wrong and may try it again. Anti-Acid makes sense for diarrhea.
I have notice diet helps everything I read points to soluble fiber, potatoes are one, so he eats mashed potatoes, mashed cauliflower, the tops of broccoli (that is what he’ll eat), sweet potatoes. I am now looking into Barley, and cod liver oil.
My son said, Mom 1 of 5000 babies are born with this disease, and I said, maybe 1 of 5000 are born with Down syndrome, let’s be glad that this is a disease not a syndrome.

I think we are in the eariler stages of this disease, please any advice would be wonderful.

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D.B.

answers from Nashville on

Hello, I'm sorry I don't know anything about the disease (I can only imagine what a struggle that has been), but I did have a child with horrible diarrhea that would not go away. Desperate, I wrote a health consultant who I buy cleaning products and vitamins from. She told me about a product called Optifora. It is the only thing that worked. It was amazing. I don't know if the diarrhea is related to your daughter's disease and I don't have a miracle answer, all I can tell you is it worked for my son and I've never seen or smelled anything worse. It is a probiotic called Optifora by "Shaklee". I will copy from their website a description. I hope something works for your precious little girl. Di

Optiflora Probiotic

Maintain Healthy Digestive Balance*

Enhancing the growth of beneficial microflora promotes long-term colon health.* Optiflora is a unique two-product system that provides both the probiotics and the prebiotics. This patented probiotic guarantees the delivery of live bacteria to the intestine.

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S.S.

answers from Nashville on

I would try going gluten free for a month and see what happens to her stool, it has changed our lives and healed my sons diarrhea after four and half years of suffering with it.

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K.F.

answers from Charlotte on

My 18-month old son had Hirschsprung's disease and he also had the corrective surgery. He does have times off and on where he gets a severe rash (open bleeding sores) on his bottom that last for a good while. After going through several doctors visits and lots of different creams both prescription and over-the-counter we finally got a combination that clears him up in a few days. First after every BM, he gets wiped off with soft cloths and warm water, pat dry and then apply some Lotrimin Anti-Fungal (the maximum strength) and over that apply Desitin (the one in the tub with the purple lid). The reason we use the tub Desitin and not the tube is that the tub has 40% zinc oxide and the tube has considerably less. Each time his bottom starts to red, we use these two products and he clears up. In between you may even want to continue a light layer of that Desitin to keep off the rash. Good luck. My heart goes out to you. I know how difficult it is to see your little one with this pain.

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K.S.

answers from Raleigh on

I really feel for you and your poor little girl! What a terrible situation, I am so sorry that she has to suffer so. I am using a diaper rash cream that has goat's milk in it. It seems very good, and I ordered it from Drugstore.com. It was about $7 for a big jar. Have you tried macaroons? I may not have spelled it correctly. They are coconut cookies. I have read wonderful things about what they have done for diarrhea sufferers. Aside from bathing often in baking soda baths and slathering her with cream- I don't know anything else. Who in the country is a leading expert on this syndrome? She may need more surgery. God Bless, K.

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S.S.

answers from Charlotte on

Just an idea, but since she is allergic to yeast, have you asked about the possibility of a yeast infection? It's very similar to 'diaper rash', and it can cause open sores that bleed. It also takes a long time (two or more weeks) to clear up. Both my son and daughter got yeast infections and diaper rash ointment made it worse. I use a clotrimazole (sp?) (brand name Lotrimin AF Anti-Fungal) cream that I buy in the athletes foot/Dr. Scholls department of Target/Wal-mart. You have to use it for several weeks even though it looks like it disappeared. Good Luck!

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M.B.

answers from Raleigh on

When all else has failed when it comes to sore and itchy places, I clean the affected parts and use just plain glycerine. It fully adheres to the skin as nothing else does and doesn't dry out like creams and lotions, even those like Butt Paste, etc. It also soothes dry skin, again like nothing else.

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K.W.

answers from Rocky Mount on

W.,
Several people in my family have Celiac Disease. It involves many aspects but the key aspect is an intolerance to gluten (a substance found in many wheat and grain products). This does not usually show up on food allergy tests. My dad (now elderly) had suffered from open sores on his bottom and bowel problems throughout his life. Medications and creams were of no help. Once he was diagnosed and was able to make the dietary changes needed, it has helped him tremendously! Many doctors are not aware of Celiac or have only limited knowledge. There is a blood test that can definitively identify Celiac. I would urge you to ask for this test. Celiac may not be your child's problem - but if it is, you will have so much more information about how to help her. There is a Celiac Society/Association with a website and newsletter that are very helpful and there are many cookbooks available now with great recipes for cooking gluten free. Whole Foods carries many gluten free products. I hope this is helpful.

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D.L.

answers from Lexington on

I'm a nurse, so I tried to think of ways we helped babies in the nursery with sore bottoms. After a warm bath to gently remove any ointments, pat her bottom dry. She can dress except for pants or panties. Let her lie comfortably in a knee/chest position so her bottom is up in the air, and expose the area to the light of a 60 watt regular light bulb. A goose-neck flexible lamp would be ideal, but improvise if need be. It should be close enough so it feels warm, but not hot. Figure out the safety factors before bringing her into the picture of course. Perhaps read to her for 20 minutes or so, and you're done. Unless absolutely necessary for comfort, do not apply any ointments or powders, but do let her wear the lightest weight cotton panties she has, as the only layer of clothes on her bottom. I hope she likes to wear dresses. The less fabric between her and the air the better. It's tricky to keep this private and sensitive area dry and light exposed, but it can be amazing how much it helps. Do the light treatment 2 or 3X a day, as it is harmless, and does not have to be preceeded with a bath unless there is no ointment or other meds on the skin. Also, after each bowel movement, teach her to pat dry and wash her bottom with plain warm water (soap only when necessary). She's little, but it will boost her confidence to take care of herself. For kindergarten, she could have a little 'kit' that she could carry to the bathroom when needed. Good luck, and a hug for you and Alexandra too. D.

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K.A.

answers from Charlotte on

Dear W. J. I am a mom of a 2yr.old little boy name Mason, he actually is trying to help me write this response. Anyway he has severe Eczema which is obviously no where near as serious as your little one's condition, but I saw that your little one has a allergy to dairy however, if you haven't already you might try a soy based milk, I know that regular milk has been known to actually cause constipation to a normal person without this condition, so maybe the soy milk will actually help "stop up the system" a little to help stop the diarrhea and hopefully cause a normal bowel movement. P.S. I told you my son has Eczema and his Pediatrician has prescribed different types of Steroid Cream 2.5% which sounds a little scary but has helped tremendously on his horribly sensitive/fair skin. Hope this suggestion helps,
Mom from NC, K.

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