Grandson diagnosed w/ HD

Hirschsprung's Disease
#1

my grandson was diagnosed with HD and is having his colostomy on thursday Conor is 14mths old and wanted to talk to anybody who has been through this as my daughter is a single mum of two and we had never heard of this disease and I found this site when searching for info Claire is scared of facing the bag and what she has got to learn and would like to support her as much as I can

UPDATE:
Conor had his colostomy is doing so well drs have said he can come home tomorrow 01/09/08. Claire is coping very well with the bag and we would like to thank all kind people on here for their messages of support and encouragement.

#2

I think anyone that has never had a bag theirself is pertriied of a bag on their child. My wife and I included.

My son is just 4 months old and has had his ostomy for 3.75 months.

Your daughter should get some type of training on changing the bag and caring for the stoma. It is not very difficult, in fact, you will probably be suprised how easy it is.

Before your grandson gets out of the hospital, call the suppliers and ask for samples.

We have had very good luck with our two piece bag system and it has become second nature to care for the ostomy.

In fact, after a long day in the mountains our son’s bag leaked in the hotel room at 3am. The bag and wafer was changed in under 5 minutes and frankly probably just as quick as changing a dirtydiaper.

Tell her not to worry and read up on the ostomy as much as possible.

#3

Thank you njcowboy for your reply it is nice to know that there is somewhere to go when things like this happens,I will take up your advice and read as much as I can today before his op and will update when it is all done.

MAUREEN

#4

Hi

My son Ben has LSHD - he is now 17mths old - we live in Bristol - so not far from you! Ben is treated at the Bristol Childrens Hospital.

Ben had a colostomy for about 4mths. We too were very scared of the bag - but the hospital will train you how to change it and care for it.

You will get used to it very quickly - and actually its easier than nappies !!! I remember another mum telling me that at the time and I was very sceptical! but actually it turned out to be true.

If you or your daughter want to chat - please message me in my profile.

Will be thinking of you all on Thurs.
Lorraine
xxx

#5

My 1st born needed a colostomy. I was only 16 (he was in the hosital and having surgery my birthday weekend) and I was able to quickly learn how to care for him w/ the help of the nurses. Also I had home health - where a nurse came to the house for a week or two a few times a week to make sure I was doing everything correctly. It’s not fun, but is completely doable. My 1st born had the bag for almost 4 yrs. - this was 17 yrs ago

I was lucky w/ my 2nd born, he also has HD but we were able to meet w/ a surgeon who knew how to do the surgery w/out the need of a colotomy. This child was dx shortly after birth and before any damage could be done to the intestines from going undx for so long.

I wish you guys the best of luck and truely know that you all will be able to care for him and the bag w/ ease w/in weeks. Sure there will be bad days and set backs everyonce in a while, but for the most part it will become routine and not a big deal.