My son is 8 years old and had a successful pull through at 9 months old.
We are still struggling with night time bowel movements while he is sleeping. Anyone else have this issue?
Yes – we are struggling with this issue as well.
My daughter Naomi is 4.5 yrs old. She has SSHD and had her pull through at 6 weeks old. Currently she takes 3 ex-lax squares a day. She generally has a large stool at night or in the very early hours of the morning (4 or 5 am or so). It does not matter when we give her the ex lax she still stools when she sleeps.
We just got back from seeing Dr. Michael Allshouse at Childrens’ Hospital in Central California to talk about this issue. He thinks that at night Naomi is somewhat hypermotile, but that she still needs the ex lax to “push it out.”
So, he is thinking of giving her something to slow her down at night (a very small amount of imodium) and then ex lax to try to have one large bowel movement a day. He thinks that she is likely to grow out of this at some point but that it could be a long time. So, we=A0have decided to take the next year - while Noami is in her last year of preschool - to continue to try laxatives, medicines, diet changes, etc, and then if by next summer we are in the same place we are likely to do a Malone procedure before she goes into kindergarten.
I hope that helps!
Take Care,
Jessica
We were having the same problem too, along with accidents and leakage duri=
ng the day. Jake had his pullthrough at 11 months. We decided to have the c=
ecostomy last June. Now he has no problems with any of it. He also has his =
privacy back, he can do his cecostomy flushes by himself.
Shannon, Jake 13 yrs., colostomy 2 days, pullthrough 11 months, chronic con=
stipation, cecostomy 12 yrs., asthma, food allergies, EGID, Troy 17 yrs.
This is the response I received back from the nurse.
Shannon
Shannon,
Thanks for the feedback and I am happy to hear that Jake had a good time and returned home more accepting. That is our goal! We love to hear feedback. Not sure what happened with the flushes and medications. I don’t have the applications with me as I mailed them to my home after camp and have not received them yet.I do know that if you put down he is independent then the nurses just remind and don’t actually observe to make sure it is done. If that is the case then next year be sure to put down that you would like us to make sure that he actually does his flushes and takes his meds and we will keep a closer eye on that. I hope there were not any ill effects!
We had a great camp and I hope you were able to look at the photos that we posted on the website www.rally4youth.com
Warmly,
Liz Hiltabidel MSN, RN, CWOCN
Youth Rally Medical Chair
Are there any side effects to being on immodium for a long period of time?
WOW, I do have lots to write on all these subjects. I will start with the immodium. My son was on it for about 6 months until we heard about the long term effect. Bassically, the job of Immodium is to dry up the water in the intestin. After a long period of time, the intestin will stop producing water, therefor drying up completly and causing severe effects and complications.
We are presently in hopstial (day 12) cause my son’s cramps were so severe that they have put in on morphine. For 3 months, Tristan would scream everytime he had to push a poop (about 20 - 30 times a day) and was to the point that he was banging his head on the floor. We are presently awaiting a concult from another hopsital as to what can be done for him and his pain. We know it hurts him when he needs to push but no one here can figure out why. We have done ALL tests possible and everything comes back normal which confuses the doctors even more. The surgeons keep telling me that an ostomy is the last possible thing they want to do, but if they can’t stop the pain, what other solution is there. He can’t live on morphine for ever!!!
Anyone else have to deal with this issue?
Melanie - Mom to:
Leanna - 4
Nathan - 18 months
Tristan - 18 months (LSHD)
Hi Melanie,
How is Tristan doing? Are you guys home from the hospital? Were you at CHEO?
Paula,
Mom to Emery 3, (SSHD), & Matthew 6 months
HI Paula…We got out 2 weeks ago after a 5 week stay. We are on our way to CHEO this afternoon and it’s looking like another hospitalization. We are scheduled for a TELEHEALTH with Sick Kids hospital in TO but not until November 3. In the mean time, Tristan is living on morphine 2-3 day to help eliviate his pain. His BM were down to 10 but in the past few days he shot right back up to 30 and his pain has intensified. It’s very frustrating cause every specialst we see always has the same answer: WE’RE NOT SURE WHAT’S WRONG WITH HIM!!!
Hope emery is doing well and that your newest addition is doing awesome
Melanie - Mom to:
Leanna - 4
Nathan - 18 months
Tristan - 18 months (LSHD)