child with mega colon and mega bowel

[sharon0507]

My 9 yr old boy has  been diagnosed with mega colon and mega bowel and has had chronic constipation and been on laxitives since birth. he's not getting any better, suffers with over overflow most days, now gets heartburn most days as well. Every time we go hospital for appointment just change his meds to a higher dose. he is on Sodium Picosulphate 10 ml daily, 4 Movicol daily, 4 benefibre daily. At one stage was on 12 sachets of movicol.  Transit test showed narrowing in a tube which apparently can be helped temp by an injection of botox into it under a g/a but this only helps for about 3 months. Now has not has a b/m since Saturday, overflow has dissapeared, had stomach pain all day yesterday at school but never told anyone ! Help . is there anyone else in the same situation. Do i get him a second opinion on his condition, or has anyone any suggestions. He does not go on school trips etc because he is frightened people will notice his condition which really affects his quality of life.

[molly0070]

Hi Sharon,

My son also has the been constipated since birth, and we have continued movicol since he was about 2, doing regular dis-impactions and lots of soiling, loss of sensation to go to toilet. My son was diagnosed with Megacolon 2 weeks ago and we were advised that we should continue with the Movicol and also use Senna Liquid once a day, The senna is to help stimulate the bowel and the movicol is the softner,it also really important the he drinks plenty of water .
I am sure Sharon you give him lots of positive reinforcement and the school need to work closely with you and your son on this, My son was helped by  setting up a toileting bag with spare pants,trousers,nappy sacks and toilet wipes in so should there be an accident he could easily go and tidy himself up, also reminding him to go to the toilet before any outing or activity, I would say however coming from a healthcare back ground if he is continues being sick you must go back to the doctor. I am still researching this condition myself in children, I hope that u find the answer you are looking for but hang in there xxx

[babbiholder]

My son is 8yrs. and has the same condition! We are having surgery and allowing his bowels to rest and hopefully go back to normal! Some kind of irrigation in the bowels! I find it weird that it seems to be just boys I hear with this!

[CalGal]

It's possible it could be Hirschsprung's. You may want to do some research into that condition.

[dkj11]

we just go the diagnosis on my 9 year old last night - i haven't sorted out the treatment plan yet, but the doctor did say that we aren't going to worry about diet except to the extent that he eats tons of fruits, vegetables and water. the focus is going to be on miralax and metoclopram 2.5 mg before each meal. we'll x ray every few months - since he had a colonoscopy yesterday the doctor is thinking that we'll be able to keep him going and hopefully the x rays will show a shrinking of the colon. its the size of a nerf football!!   my son missed school too, no heartburn, but he has been throwing up since august - i'm sorry that your boy has this too -

i'm just starting my research on this - i'm printing out every article i can find - if you found any really informative ones i'd love to hear about them, and i will pass information to you too - i'm really curious about the genetic portion of this - have you found out if family members have it too???   we're off for thanksgiving vacation today, but will be back in december - good luck!