Hello All~~`
I guess here I am just wondering what to expect for the future. Keegan had his pull thru Aug. 14th and he still has cronic pooping… 20-35 diapers a day…all like pure water… We are currently having tube feeds to keep up on the weight… Finally growing but in the feeds he is getting 4 grams of fiber… imodium 3 times a day, multi vit, vit d, colistyramine (sp) 3 times a day, rafaxime(sp) 2 times daily… Still with all of this it hasn’t made a dent in the poo. He is always whining bc his butt is soo bad and no matter what I put on it… it still is the same. I am so tired of poo. Somedays I call my mom over just to change daipers. And it is not smears it is poo!!! So when is it going to end?? Is it normal for this much?? My Gi and surgeon don’t know what else to do for him. Right now we are waiting to see if things will change but how long?? How long to poo gets to be on a short of reg. basis??? PLEASE HELP!!!
Hi there! My son had his pull thru last summer, we’re about 15 1/2 months later. We had lots of poop all the time too, until he was 7 months old and we started him on solid foods. Then they finally started to get down to more like 5 or 6 a day. Now he’s completely on table food and he’s down to 2 or 3 a day on average. Once we got down to 5 or so, the rash started to get way better. The bulking up of the food thickened up the poop and he was getting better control of his bottom muscles so he wouldn’t just leak poop continuously. Now, we just use the thick Desitin with most diaper changes (not the crappy creamy kind). But when he gets the raw bleeding bottom (and he still does fairly often) we use Ilex. If you haven’t used it, please try it!! I know it hasn’t worked for everyone on this board, but it was a miracle for so many others. if you need help using it, feel free to ask! We’d be glad to help you.
How old is Keegan? And what type of HD does he have? I’m sure things will get better for you with time! Good luck!
jessica
Keegan is 13mo and is on solids(if he will eat them) He is only getting tube feeds at night to help with his weight issues. I did not know there was different kinds of hd… He has had a little over a foot of his colon taken out. We have tried ilex but it didnt really work well for him. So they had wound care come in and they gave him some powders and some creams.
yeah, we have Short Segment HD, so at 10 days old my son had about 4 inches taken out of his colon. It was his rectum, his sigmoid colon and just a tiny bit more. But some kids have Total Colonic HD or Long Segment HD, and they tend to have more severe problems with the bowel movements and such. Sounds like your little one may have Long Segment. We were given some stomahesive powder at the hospital, but it never worked well for us as far as diaper rash. I’m sure it works better on a stoma!
Alasdair is on a really high fat/high calorie diet because we have weight issues too, but we’re fairly certain it’s just genetics and not the HD. But we pump him full of what we can all day long. he’s really picky too, so we try to make every bite count.
I hope someone else on this board may have better answers for you than I. Good luck!
they might have already giving you critic aid paste, but if not try that one for rashes.
what about a 2nd opinion from another GI dr or surgeon?
My son is almost 14 months. He had his reconnect at 6 months, so we are about 7 months post op and with in the past few weeks, he has started to poo less frequently. We were in the same position as you with the constant diaper changes and bleeding rash. I tried the Ilex at first and hated it, but I gave it another shot and now I still use it daily. It took some getting use to and alot of Vaseline.
Hang in their-