Please give me some insite!

Leigh - posted on 09/28/2009

My son lost I think less than a foot of bowel and his BMs are often and difficult to explain to people (smell and his lack of knowledge of it). he is 9 years old. His last surgery was when he was 4, There is a test that they can do to see if she has control of the rectum nerves. I would also make sure that the test her for any infection in her bowel.
We started using ultra thin maxi pads in his underwear, so he doesn't have to wear diapers.
I found that the doctors can be the most unhelpful with the problems sometimes. I had one surgeon suggest a half of a laxative to get him to go, and make sure he sitting on the potty, and that has his idea on how to potty train.
Good luck!

Amanda - posted on 09/19/2009

so did he have to have that. Oh does this just make it so he doesn't have accidents? Beucase I guess thats our problem with our daughter. Is we want her to have control of her bowels and get potty trained.

Heather - posted on 09/19/2009

The ACE has been WONDERFUL!! He has a tube under the belly button line into his appendix. I fill an enema bag with watter and salt and let it slowly run in. He sits on the potty and plays video games. (it takes about 30min) It looks about the same as the stoma for the colostomy bag. As long as it goes in slow enough he has little to no cramping with it! And nothing up his bum so there is no screaming! He stays contanant a good 24h before he needs antoher one. We just make it part of his bedtime routine. After he is done he puts on a pull up to catch any extra mess after it is over and in the morning changes into underware! http://www.thechildrenshospital.org/cond... This gives a little more information. When I was looking it up before I had a hard time finding information on it. I think it is not widely used yet.

Amanda - posted on 09/19/2009

Heather, it sounds like your son and my daughter have went through the exact same thing. Same time period for the surgeries and everything. But Peyton, my daughter is only 2 1/2. I'm starting to wonder if peyton will ever beable to control her bowel movement and be potty trained. So I'm really interested in what you go through for your son. Really intersted in this "ACE" thing you talk about. We are going to see a GI specialist in a month.

Heather - posted on 09/19/2009

Hi I just want to intoduce my self. I am new to the board but not to Hirschsprungs disease. My son just turned 7 the end of last month. We found out he had HD when he was 3 days old. He had his surgery when he was a week old. After 3 weeks we went home..... when he was 3months they did his pull through. He struggled with incontanance ever since.... there was never a time when his diaper was clean. They did tests on his muscles and said that from what they could tell they were ok. We tried diet changes, fleet enemas, bag enemas, gave it time, and every cream you could think of for the HORRID rash. Finally when he was 5 and not potty trained they mentioned giving him an Antegrade Contanance Enema (ACE). I was torn about it because it is a tube that goes into your appendix and out your belly. It cleans out your large intestine from the top to the bottom. I am so glad that he got that!! His rash is gone, He can wear underware to school, and all I have to do is give him an enema through the ACE every night and he doesn't even mind that too much! I have been through so much with him and its nice to be able to talk to other moms going through the same things I had. I don't know how old the oldest is here with HD but it looks like so far he is.

Angi - posted on 08/29/2009

I also struggled with the "rare for girls" thing. Having the biopsy made it easier because the cells are either there or they aren't. Her's aren't, so she must be one of the "rare" ones. That statistic also made my dr. doubt that it could be Hirschsprungs. She probably would have been diagnosed much earlier if he hadn't have read that!

Erin has a problem with juice. We also use rice milk. She still has bad rashes, but they are becoming fewer and further between, thank goodness.

I think we'll try the v8 fusion. I think that's a great idea!

Jennifer - posted on 08/28/2009

do you use probiotics? alo of the HD moms I know use them and we use them here in there.



It's a good idea to stop the milk and see if that is the problem. mine had a had time w/ milk so I did soy, he was having lots of diarrhea and i figured it was the Hd. I finally read that ppl can have issues w/ soy as well. I stopped the soy and the diarrhea is gone. I do goat and almond milk now. I can even give him juice now. I give him th V8 fusion (fruit and veg juice) and he likes them alot and this way I get some beggies into him.



I hope you get into see a GI to see if he has any ideas or maybe a stoll test to makes ure there are no issues.

Kirsten - posted on 08/12/2009

Yes I still wonder what I did wrong with the pregnancy for her to get this.. But they say its nothing you did while pregnant..! And I never thought Id talk about poo so much in all my life lol. I couldnt have been more excited when I started seeing poo in her bag! Her poo is always the normal pasty formed consistency. I only had one day where it was runny but I think that was because she was teething at the time and it certainly smelt like a teething poo lol. Shes had the bag 3 months next week. I see a certain pattern with Ella she seems to do most of her poo in the morn after breakfast then I emtpy a bit more early afternoon then before bed. I notice for example if I change her bag before bed its usually nearly still completely clean in the morning (till after breakfast) So from what I can see she pretty much has a routine with her bowel but yes little bits come out during the day but not enough to empty the bag more than 3 or 4 times a day and even then I only let it get say quarter to half full so it doesnt pull too much. And I have to say I dont bath Ella I just sponge bath her cause Im still worried about poo going everywhere lol..

Amanda - posted on 08/12/2009

I know exactly what you mean. When they told me the percent of babies having this disease and how rare it is, especially for a girl. . . I was like, well then why and how did this happen to my little girl? And then after the surgery's everything has been greeat, except nobody can believe how often she needs diaper changes! and of course I just heard it would start to get better and get normal and then once it came time to potty train, and I saw no progress from since she had surgery, it makes you start to wonder. But I guess it could be worse.



Question though about your daughter still having the stoma. Is it really runny and diahrea like with that? OUr daughter had a stoma from 5 days old til 3 months, but we would give her a bath and well lets just say there was poop in the tub if you took the bag off to clean it. THere was stool coming out of the stoma 24/7 it seemed like. So I guess I'm wondering now what it's like for you daughter with the bag?

Kirsten - posted on 08/12/2009

Ah ok, well as you prob gathered Im in Australia, Queensland. I've heard HEAPS of different things children can get in association with this disease.. some children get them and others dont. Some get the really bad rashes and some dont I guess it all depends on the child and of course how much bowel they've had removed. From what Ive been reading those children who have TCHD seem to have more troubles with tollerating foods than say those with SSHD.. Im still trying to get my head around all of this as well. I still think maybe my daughter doesnt have this disease? I mean its just not possible! The ration is 4:1 boys to girls why didnt my son get it first? SO many questions.. :( My daughter is eating cheese and drinking milk and juice at the moment with no troubles at all. She still has the bag as i mentioned and I hope after her op she will b the same but I'll have to wait and see I guess.

Amanda - posted on 08/12/2009

Oh sorry, North Dakota, US. I've also heard that alot of kids with Hirschsprungs are lactose and tolerant? I read it online when I was researching. But my daughter loves milk. I was thinking about not giving her milk for a couple days and just lots of water and stuff and maybe see what happens? Maybe I should try rice milk, I hate not letting her have juice becuase all the kids around her get juice. We went a whole year with no juice and she would just beg for it, I feel bad. so I don't know, I'm just stuck!

Kirsten - posted on 08/12/2009

This might sound stupid, where abouts is ND? Doesnt sound like your doctors are being one bit helpful! Thats just horrible. I must say Ella's surgeon in Brisbane is just fantastic. Has explained everything to us in detail and is more than happy to answer any questions or concerns we may have. Im sorry you arent getting the same there! I did read another mums post she was having problems with juice and milk with her little one. Juice made her child get diarrhea and milk didnt agree with him either. So her little one drinks rice milk? and stays clear of juice..

Amanda - posted on 08/12/2009

I'm from ND. We had to drive 5 hours away just for the sugery's and everything. I did look at that website and many others, but still no help. I've tried everything they say. And I recently asked her doctor to see a GI specialist and ofcourse there not people very nice about referring her to one. I hate ur hospital in this town!

Kirsten - posted on 08/12/2009

Hi Amanda. Where abouts are you from? there is a wonderful website you can try, lots of answers that mums can give you who's kids have gone through the pull through op. http://s3.zetaboards.com/Hirschsprungssu... I hope that works..