Hello,
My son Keegan, 18 mo olds, had surgery at 3 mo to place a stoma. Things went well with that and he had cronic diarrhea afterwards. The drs told me not to worry it was normal. This went on till he had surgery at 10 mo old to remove all of his descending colon and reconnect it to his bottom. At this time things seemed to be ok for about a month and then he started getting bacteria infections and major weight loss. They started him on a feeding tube that lasted for about 5 months and then he woke up one day and started eating and gaining weight. But in the mean time we are still dealing with 20-30 times a day of stooling. I feel like I am at the end of my rope anyone been here???
Sorry that someone else is dealing with this. My son had a total pull thru at 4 months. He had those constant smears. Sometimes 40-50 a day. With the lots of prayer, we started him on a hal and half mixture of alimentum and enfamil. He had a nasty diaper rash, but I find that calmoseptine worked the best with my son. He is 3 1/2 years old. He weighs almost 40 lbs. He has had only one surgery (the pull-thru). He has had bacterial infections since the surgery, but flagyll works wonders on that. Praise Jesus for the miracle of my son.
Jenny
I’m sorry to hear of Keegan’s troubles. My son did struggle with the 20-30 poopy diapers/day after his surgery. Is Keegan suffering from diaper rash? I noticed the # of BM’s tapering off around 6 months post op but he still has as many as 10 sometimes- everyday is different. There are a couple of reasons why this could be happening.
Keegan had more of his colon removed than my son did so things may move through him quicker. My son’s problem is actually constipation even though he poops all the time. He has small BM’s several times a day and a couple of large ones each day. Chase never fully empties. Are you still seeing your surgeon or do you have a specialist.
They may put him on something like Imodium to slow things down or laxatives to push things through all at once. We are just now starting our search for the right laxative because I’ve been hesitant to use drugs to manage Chase’s HD problems. I’m to the point now that I just want to get this figured out before he gets ready for potty training.
Jo
Hello…
We are seeing our surgeon and Gi docs. He has been on every medicine both ways and nothing has touched it!! Keegan has a very bad diaper rash we have put every thing on him and nothing seems to help. We mostly are using bag balm now (started it about one month ago) and it is helping protect and HEAL which is a big one. As long has he does not eat fruits or veggies, his bottom seems to not bleed as much. He also is not having poop smears but actual med-large poops. Right now we are waiting to get into the colon center in cinn Ohio. Dr. mark levitt there is wanting to take his case on so we are just waiting for insurance and records transferred.
I’m glad to hear you have plans to with Dr. Levitt…everyone says he is the best. I’m sorry to hear that his diaper rash is bad.
We’ve also tried bag balm at the recommendation of our surgeon but Sensicare and Critic Aid seem to have worked the best for Chase- even with the 20+ BM’s per day.
You’ll have to let me know what the outcome is. If we aren’t able to get Chase’s BM’s under control I’m hoping we can save enough money to make the trip up there.
Good luck with everything!
Jo
Reading about Keegan’s story has completly described my son Tristan’s condition. After his p-t at 4 months of age, Tristan was pooping avery minute. My husband and I did not sleep for a full week as we were taking turns sitting by his bed and trying to keep his bum dry to stop the irritation and bleeding. Our surgeon had told us to leave him bare bum, to put a fan on his bum and to apply malox to form a protective coat. After trying ourselfs for a full week we finally brought him back to the hospital where he was admitted for another 2 weeks. We started him on Immodium and it helped bring his bowel movements down to 35-50/day. When he started solids, he went down to about 20-30 a day and we also introduced Metamucil to help form his stolls a little. Poor baby was miserable. We tried a total of 26 creams before we heard of Ilex Paste. What a miracle cream. He has been on it now for one full month and his bottom has never been happier (except for right now as he is on antibiotics and it is creating yeast and making him bleed).
Tristan was hospitalized about a month ago because his bum was so irratated that blood was oozing from it. We brought him to the ER because there we so much blood we could not tell if it was coming from his bum or from inside. I fought to have him admitted as I could NOT deal with this anymore. Between Tristan’s constant needs, his twin and older sister were completly neglected and it was taking it’s toll on all of us. While in the hospital, I was informed of the long term effects that Immodium can have to one’s system and I immediatly took Tristan off of it. (if some of you have your child on this, please do some research as it could cause some SERIOUS problems). During our stay, we started giving Tristan daily fleets (enemas) which seemed to work well. We were sent home on the basis that we would give Tristan daily fleets until further notice.
Poor Tristan hated it so much and it hurt me to do this to him. I decided to bring Tristan to an Osteopath to see if he could help. Boy did he ever. He told me to start giving probiotics for infants to him. Within the first 24 hours, Tristan had his first solid dark brown poop ever. His bms also went down to 6 a day. I’ll repeat, 6 A DAY!!! He has been on these probiotics for 1 full month now and it is still working strong. I have spoken to quite a few pharmacists and doctors about this and they all agree that with HD and all complications that can arise in the colon/intestin, probiotics would certainly do him good. I am not sure what brand is available where, but a pharmacist would be a great place to start. I swear by this. I just wish I had started this sooner! What I also love about this is that it is completly natural.
If you want more info on this, just send me a message
Take care,
Melanie
Mother to twins Tristan (HD) and Nathan both 13 months old and daughter Leanna, 3 1/2
Sorry to hear of all the problems but man is it nice to know there are others out there. We also did Immodium, fiber and probiotics. We have been on several meds at different times. We also went with the enemas for a while. I took him off all of the meds after about 5 and 1/2 months of NO change. We alternated items all the time but nothing seemed to help. It really seemed to make things worse. He was crying all the time and very gassy. So now he is on nothing and we are doing botox treatments every 6-8 weeks.
With keegan as far as his bottom goes we started using desenex powder at least once a day if not more( up to every diaper change) with the other creams to keep of the yeast. It works WONDERS!!! 
Wound care is the one who told me to start using it and it works soooo great. It is for athlete’s foot and you can buy it at walmart or any store. We really powder him up and then put his cream over it. Also if his bottom gets to bad we let him sleep naked and we bought the big blue pads online and lay a bunch in his crib and if he wakes ok if not we just bath him when he gets up and the air really helps. Also if you get admitted again over the bottom tell them you want to put oxygen on it, it really helps.
I am so glad to hear things are looking up for you…Good luck
Maybe I’m just totally out of it, or don’t have the right doctor… My daughter is 3 now and had more than half of her large intestine removed at 1 month old, pull through at 4 months old and since then we are living in a world of diareha… no one has ever mentioned that she may actually be constipated (regarless of the never ending dirty diaper). She also never seems to be able to fully empty her body of poop. Can someone explain (so I can talk to our dr with a better understanding) how can she be constipated and yet have a dirty diaper 24/7? If her stool is already sooooo watery, how will fiber help?
Thanks
My son also has very frequent BM’s but he is constipated.
We had an x-ray done in July that showed ‘gas and stool throughout’. It was not considered severe constipation- there were no obstructions and no distention. We also had a stool study done that showed his bacteria levels were really off.
He basically has no good bacteria in his gut and the bad is overgrown. The doctor believes if we can correct his bacteria problems it may help with the constipation. Even though he poops all the time most of the BM’s are small and he usually has at least one large BM per day. I think your first plan of attack is getting an x-ray. I will say Chase’s stool is not watery it is soft and more solid but your child could be leaking liquid stool and still be constipated.
There are 2 types of fiber and one does act as a bulking agent so that would help with watery stool.
Hope that helps!
Jo