DownSyn Forum

[julesinottawa]

Leo had a colostomy reversal in August and since then he has had numerous bowel movements every day and EVERY SINGLE ONE OF THEM is agonizing for him. We are working on it with the pediatrician and surgeon but so far, nothing is happening. I am on the edge of despair and we may have to go back to the colostomy but we would like to exhaust all other options before we do that which is why I'm checking here. For further info, it doesn't matter what state the bm is, soft and mushy or firm, he still has the pain but the mushier it is he gets major diaper rash and that's just a double whammy for him. We've tried moving away from cow's milk, trying soy milk and currently goat's milk to see if it's maybe dietary and unrelated to the surgery but to no avail. It's so heartbreaking to see him in such pain and I know it's impacting his development...he's just now commando crawling and will be 18 months on Satruday. Just looking for anyone who's either had this or some other thing with pain and how you managed the pain.

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Julie, wife to Jason, mama to Olivia (Sept 00), Ethan, (Sept 02) and Leo (July 08)Ds

[lespring]

Is it the actual movement of his colon that hurts? Or is it the poop on his skin? Or is it both???

There are lots of recipes for butt paste for pull-through patients, since their stools tend to be much more acidic than skin can tolerate. I don't know about the other pain though. What does your doctor suggest?

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~Leah~

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[DanielsMommy]

Do you know Joel's Mom (Kim)? She is a wealth of information when it comes to this subject. She's on facebook...or I can reach out to her and put you in touch if you like. She's been through it all with Joel and I'm sure can offer alot of insight.

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Lisa - Mommy to Elayna 10-1-02 and Daniel (Ds) 6-7-05
Always have hope....Without rain, there can be no rainbows.

[julesinottawa]

It's the actual movement that causes the pain. He goes absolutely rigid, as in I can lift his whole body by lifting his heel and he screams so hard that it's not even really a scream anymore because his throat muscles are so tense, his face turns purple/red/blue and he breaks out in a sweat. He grabs at anything in his vicinity, which usually starts out as his own hair until I can force him to hold my hands instead. The rashes are awful also, cause him to hold his butt cheeks so tightly that we can hardly even get in there to wash. We've tried at least 10 different creams. But that's really the secondary issue and the rashes aren't always present. Anyway, I would love to be put in touch with anybody who has any experience in this area...either through here or facebook, doesn't make a difference. The doctors don't really have much although they are trying to test anything and everything to try to narrow it down. At the moment they think he may have to grow out of it or get another colostomy for a while. Thanks!

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Julie, wife to Jason, mama to Olivia (Sept 00), Ethan, (Sept 02) and Leo (July 08)Ds

[DanielsMommy]

I'll contact Kim right now and send her here to help. Many prayers!!

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Lisa - Mommy to Elayna 10-1-02 and Daniel (Ds) 6-7-05
Always have hope....Without rain, there can be no rainbows.

[Joel's Mom]

Hi Julie....

What was Leo's diagnosis for having to have the colostomy? My son Joel was born with Imperforate Anus which is absence of an anal opening.

Immediately after the reversal he would scream and scream with every bowel movement. It would freak me out and I thought something was definetely wrong. I discussed it with his surgeon who are experts in Colonrectal Malformations and he said it was behavioral and that Joel wasn't used to the sensation of a BM. I remember it taking at least 5 mths. to get a routine going with his nightly laxative.

I'm not sure if it's the same for Leo but Joel and most kids with a colostomy reversal that my surgeon treats have to have a nightly laxative indefinetly. Most general surgeons who don't specialize in these malformations wouldn't know this. They might just suggest diet or Miralax.

Joel is now 3 years old and he really doesn't scream as bad with BM's anymore unless I give him an enema. Then it's screaming at the top of his lungs due to the cramping. The harder it is too get out the worse the screaming is.... that's why us patients use the laxative to keep the BM as an applesauce consistency per our surgeon. Also, his patients are advised to go every 24 hours... if not you have to give an enema or they can get backed up fast.

I'm thinking it's behavioral and there is nothing wrong that he just has to get used to the sensation. Over 2 years later, we still have screaming from time to time. I know we don't want to see our kids hurt but I've just learned to ignore it and I tell myself it will be over as soon as his diaper has the BM in it and sure enought it is.

But it's hard for me to give advice without knowing why Leo had the colostomy.

I can probably help you with the rashes too... most of the time they get worse with some types of food example peaches, too much juice. I would keep a journal of Bowel Movements/Diet for a while and see if you see an correlation to foods. You will see a pattern. Joel doesn't get the rashes as bad but we have had a few of the really bad ones. - blisters the size of quarters all over, etc.

PM me and we can always chat via phone or email if you want. There are a few Pull-Thru groups that I can introduce you too. Our surgeon does monthly chats with his patients on there too.

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Kimberly
Wife to Steve
Mommy to Joel 5/11/06

[julesinottawa]

Hi Kim,

Thanks so much for your info. The reason Leo had the surgery was that he had a malformation of the intestine (a very large dilatation) and it was discovered later that he also had Hirschsprung's. Our surgeon said he had never seen such a malformation without an imperforate anus so he is rather unique in that way. The surgeon is going to do another exam under anaesthesia soon and will do a biopsy to make sure there is no HD left.

I'm kind of disappointed to hear that this may go on for such a long time...the main problem to my mind is that Leo has MANY bowel movements a day, like 6 or more, sometimes 10, 12, even though they aren't large in volume and he screams for every single one. That's just too much to endure for him (and the rest of us). It doesn't seem like the consistency makes any difference in how much he screams but it sure makes a difference in the rash. If he had that many bowel movements with applesauce consistency, I don't think he'd have any skin left on his bottom.

I would love to check out those groups that you mention. It's hard to find people who have been through any of this to share info with. Thanks again for coming on here to help me out.

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Julie, wife to Jason, mama to Olivia (Sept 00), Ethan, (Sept 02) and Leo (July 08)Ds