Hi Everyone,
My son is 22 months - he has SSHD. He had a colostomy at 21 days old and then his anal pullthrough and colostomy reversal at 3 months. Since his pullthrough he has had very frequent BMs - 8-10 a day. Does anyone know exactly WHY after surgery these kids have so many BMs. My surgeon has never really explained it well. Last time I saw my surgeon she thought he should have made some improvement. Now she thinks we might not see it until when he starts toilet training - whenver that will be?? I don’t mind changing the diapers but it is the bad diaper rash that won’t go away - not even with ILEX paste, that frustrates me the most. Feeling defeated and would like more understanding on why they can’t hold it and go all at once.
thanks.
Paula.
I was told that they would not have control over their muscles like ‘normal’ babies. My husband works with an adult female that has HD and had the pull through at 18yrs old. She said that certain foods make her gassy and cause her to have less control over her bowels- beans, cauliflower, broccoli, etc. My son is breastfed and the pedi said that breast milk is almost like a laxative- hence the frequent pooping. I spoke with Chase’s surgeon today and he said it should get better with time. I’ve heard things should improve 3 months post-op but I guess every baby is different.
I’m surprised to hear the Ilex didn’t work. I noticed that Chase’s bottom looked more red when I used homemade wipes containing oils. I’m assuming the Ilex wouldn’t stick to the oily residue. We are back to using white Bounty paper towels and water. The surgeon’s office told me to never use regular baby wipes on him due to the alcohol. I agree that diaper rash has been the most frustrating part- especially before finding out about Ilex.
Good Luck!
for the rash, if you have not tried Critic-Aid Skin Paste , I would recommend trying it. It cleared up Max’s rash w/in a day, but I (with the help of this board) bought it after he had the rash only a few days. I had hared about it before his pull through and knew that rashes could be a problem, so his rash was not too bad. I gave the other normal baby butt creams about a week to see if they would work and none of them did.
We were told they are more frequent after the pull thru because the muscles arent used to it…My son had his pull thru at 14 months and had constant BM’s for a good 3-6 months and then it slowly started to go down. We struggled majorly with the diaper rash, but ilex did work with him, but got very expensive. My son will be 5 in July and we didnt really try to potty train him till this past jan. He did not wear pull ups. We went straight to underwear and he has not had any accidents… he has smears, but that is it so we are very lucky since he does have long segment HD. He doesnt even need to wear a pull up or anything at night. Also… he is down to about 3 BM’s a day give or take… I can def. handle that 