Successful Pull Through & Questions

#1

Andrew just had his pull through surgery last monday (10/6) and we are relieved that it went very well. Andrew was diagnosed with HD and given a colostomy in April of this year when he was 5 months old. At the time he had a very serious enterocolitis infection. Because of the enterocolitis there was a possibility that scar tissue and adhesions could have complicated or prevented a pull through, but there was no way to know until he was opened during surgery. Fortunately there was only moderate scarring and the surgery was a great success. No more colostomy!!! The only complication was a tear in his bladder (apparently part of his colon had fused to his bladder during the healing process from the enterocolitis; the tear occurred when the doctor separated the colon from his bladder). He has a urinary catheter, but hopefully that will come out later this week after a quick test to make sure that the tear is healed enough to prevent urine from leaking into his abdominal cavity.

I think the next step of our journey, learning to deal with post-pull through HD issues might be the most difficult yet. So far we have managed to stave off any serious diaper rash thanks to ILEX which I read about here. : ) It is definitely messy, but it seems to be doing the trick so far.

Already I have a few questions. First, Andrew does not want to sit on his bottom. Since he doesn’t have severe diaper rash, I’m not sure why he doesn’t want to sit. I suppose he may be sore inside (above his anus) from the surgery? Has anyone else experienced this? We will ask the doctor at our follow up later this week what he thinks.

Second, the frequency of his bowel movements is already beginning to drive us to insanity. It is not uncommon to change 5 or 6 diapers in an hour. Often as soon as I get a fresh diaper on him he will poo again. Fortunately it seems to come in spurts so it isn’t all day long, but there are probably 5 episodes of frequent pooing each day. His poo is the consistency of pudding - I wouldn’t consider it diarrhea except for the frequency. Is this something that gets better over time? We are giving him immodium twice a day - maybe we need to increase the dose? If any of you have any suggestions for reducing the frequency of his poos, please let me know.

Thanks!

Thanks!

#2

I’m glad to hear about the successful surgery!

As for the sore bottom. When they do the surgery they spread the anus and it opens it up WAY larger than normal. He also has internal stitches. I’m sure he is pretty sore down there. My son was too young to sit when he had his surgery but he was uncomfortable.

The frequency does get better with time. Chase’s stool was total liquid right after his surgery. We could hardly keep a clean diaper on him because it was constant. For months I had never changed a wet diaper. We still battle frequency but it his stool is thicker (still soft) and he poops about 8 times per day. Our GI seems to think he will our grow it. I wouldn’t do anything to stop him from pooping. His body needs to heal and his stool need to be soft. You don’t want to end up with a blockage. Even though he poops frequently he can still get constipated. You have to watch for the quantity of poop per day. Keep using the Ilex and you will be fine in the diaper rash department. I can remember getting so frustrated one afternoon because I went through 4 diapers in one diaper change! Chase went through 20 diapers in one day at school- not to mention the time he was at home. Just put a good layer of Ilex and don’t stress about him having a poopy diaper. Sometimes you just can’t keep it off of them no matter how hard you try. Frequent wiping can almost be worse than a poopy diaper. Make sure you are making your wipes with plain water or something gentle. Store bought wipes are harsh on HD babies bottoms.

Sorry for the long email… we were there not too long ago!

Jo

mom of Chase, 7 months, one stage pull-through at 3 weeks.

#3

I hope this email gets to you…I’m Geremy mom of Joshua who’s 10 mo’s old TCHD. He had his pull-thru 2 mo’s ago, and I noticed that the Gerber rice cereal 3x day slows him down considerably. Of course, at this age he’s interested in more than just rice cereal, so w/each veggie or fruit I give him, I also give him about the same amount of cereal. For example, if your baby eats about a jar of baby food at each serving, I would only give half of that jar, and an equal amount of rice cereal…that way your baby is still getting the same amount of food, just half will be baby food and the other rice cereal. I’ve managed to slow him down from 12 per day to about 6-8 per day, and he’s not on any meds either. Keep in mind every baby is different, but I would sure give it a try :slight_smile:

Tell me what you think,
Geremy

#4

Thanks for your advice! It is reassuring to hear that others have traveled this road before us. : ) I have decided not to change his diaper every time there is a tiny bit of poo in it. Jo, I think you are right; frequent wiping may be worse than a little poo especially if there is a thick barrier of ilex on his bum. And he hates having his diaper changed so much - I think taking the less frequent route will save us both a lot of stress. And Geremy, I will give the cereal a try. I tried cereal when he was just 6 months and he never liked the flavor, but maybe if I mix it 50/50 with fruits or veggies he’ll like it better. Thanks again!

#5

I see you already have your answers, but I just wanted to say that we had very freguent diaper changes/ poops after pull-through as well, It does get better w/ time for most of the babies.

you are not alone.